It took me awhile to figure out the symptoms I was experiencing were related to my fibromyalgia. It was also such a relief to find out the symptoms were something. As I spent time talking with more than 200 women with fibro, it was so incredible to find I was not alone.
Maybe, like me, you were tested for everything under the sun before someone took your symptoms seriously and gave you a diagnosis. Or maybe no one has yet taken you seriously and you’re waiting to be diagnosed.
We are all like snowflakes, unique in how often and how intensely we experience our symptoms. Some are bothered more by pain, others by fatigue. Some take minimal medications and some are on strong medications. Some are able to work, albeit less optimally. Some, like me, are unable to work 9-5.
Here are some common symptoms of fibromyalgia syndrome:
Pain. Widespread musculoskeletal pain. There are 18 tender points, in pairs: inside of knees, inner elbows; near the crease, hips, base of skull, neck, lower back, inside shoulder blades, shoulders, and collar bone. I always have pain pretty much all over: arms, legs, neck, shoulders, hips, back, and occasionally my hands. Typically you need to experience 11 of the 18 tender points to be diagnosed. However, they are getting away from this method of diagnosing.
Fatigue: It is hugely different from being tired. Unlike jet lag or the flu, this complete exhaustion is always there. If you, as a healthy person, overdo things or have a long day and you’re very tired or feeling exhausted, a good night’s sleep will make you feel better. With FMS and other chronic illnesses, sleep does not refresh or make you feel better. The fatigue is always there, some days worse than others.
No waking refreshed
Muscle weakness: My arms and legs are very weak. When I go shopping I have to use a shopping cart. It’s like having a cane or walker. It hurts my arm to lift a half-gallon of water, so I use my other hand to hold the bottom. That makes it more bearable. It’s kind of like how you might feel if you really overdid exercise.
Headaches: I wake up frequently with a headache. Some people experience anywhere from a mild continuous pain to a full-blown migraine. It doesn’t help that our neck and shoulder muscles are so tight. Pillows can make a huge difference and I’m still looking for that “perfect” pillow.
Unrefreshed sleep: Normally, if you can get six to eight hours of sleep a night, you wake up feeling refreshed and ready to go. You feel energized to do what you do all day. For FMS patients, well, there’s no such thing as waking up feeling refreshed. That is a distant memory from when we were well. We adjust and do the best we can. Naps are often warranted.
Brain fog: It can be so many things and the severity varies. The inability to recall words, sluggish thinking, losing where you were in a conversation, not remembering from one moment to the next what you were going to do or say. In the same way that visibility is limited on a densely foggy day, we have difficulty with our brains on foggy days. It is completely frustrating. At times it makes you feel as if you have dementia.
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
Does anyone on here actually get a full night’s sleep? I certainly don’t as I can only sleep on my side (not back or stomach), and I wake up frequently during the night to change position because I’m in pain! I don’t have a problem falling asleep because the medications I take make me drowsy, but I certainly can’t stay asleep for more than 2-3 hours at a time 🙁 I’ve gotten used to it, and don’t need to nap very often, but it’s not fun at all!
I take Flexeril, 10 mg about an hour before bedtime. I have been doing this since the 80’s. It not only allows me to get to sleep, it allows me to get BACK to sleep when I awaken for no reason. I got diagnosed 29 years ago by a rheumatologist in Annapolis, MD and I had been having symptoms since college. I hope this is helpful. Please keep in mind that before taking just the Flexeril, I had taken amitriptolene alone and then mixed with Flexeril and then only Flexeril. Flexeril is very inexpensive and has worked for decades.
Thanks for the information Dianne. I currently take Topiramate and my pain specialist was trying me on Nortriptyline as well, but he’s never mentioned Flexeril. I will ask him about it. I’ve tried Gabapentin and Amatriptyline in the past which worked for awhile, but weren’t a long-term solution for me. I also take vitamin supplements (magnesium, D, probiotics, B’s, Omega-3’s).
I can eventually get back to sleep after waking up, but I can never manage more that 2-3 hours of sleep (or less) between waking. I’m so used to the pattern now, that it doesn’t bother me anymore and I rarely need to nap (although sometimes I do). I’ve found though, that on the rare occasion that I’ve slept longer than 3 hours in one position, I wake up in so much pain that I wish I hadn’t!!!
me too. Watch out with the Nortriptyline. It landed me in the hospital – almost causing seizures/coma. Lowered my sodium levels. Hell if I knew but it hit me like I was having a heart attack. I’m 61. Had this since my 40’s. As long as I am busy doing something, I’m okay for the most part. The minute I stop to sit down and just try to relax or lie down to go to bed – bam, a flare kicks in, driving me to tears till pain med. kicks in.
Thanks for letting me know about Flexeril. Sometimes it helps to get info from one who’s going through the same illness. I have had it for 34 + years. Not until I found by accident, (I call it a miracle, did I realize how many people suffer from this. Plus all these things I’m feeling are associated with Fibromyalgia, I never knew any of this. Back when I was told I had it and CFIDS. Nothing more was mentioned. And so I’ve gone on all these years not knowing why I hurt so much and cannot sleep. These groups on Facebook has opened up my eyes big time, now I get to see a specialists who can now help me with the problems. I hope you get to feeling better, I know it isn’t an easy life, but we warriors can’t give up or give in.
Mary All I can say is omg, I have tears in my eyes right now. I can’t believe you have survived with this for 34 years. I feel like this is going to kill me. I was diagnosed about a year and a half ago. It’s all I can do to get through the days, most worst than others. It’s so saddening, trying to act like I’m alright in front of my husband and daughter. I don’t complain I just await being left behind because I won’t be able to keep up. This is a terrible disease. I’m going to ask my doctor about flexeril.
Carla it might also be worth looking into ‘low dose naltrexone’. It seems to help many sufferers and is something I am looking at trying. I suggested it for a friend with MS but then went on to discover it’s use in fibromyalgia. Good luck 🙂
I’ve been using Amitriptyline, Gabapentin, and Tramadol. I’ve found that it takes me a little while to get to sleep, but I can manage to get 4-5 hours of sleep. If I get up during the time I’m asleep, I can usually get back to sleep fairly quickly. Reading this article certainly reinforces what we all pretty much feel. I was diagnosed with FM 3 years ago and was lucky to get into a medical university study for Tramadol (it was a blind study, but I knew I had the meds right away, the relief was very quick), and the regimen helps me deal with my symptoms. Unfortunately, none of us who suffer from FM have found the miracle that will bring us full relief from the symptoms. We just deal with what we have, and hope for the best. Best wishes to all.
I’ve always had unrefreshed sleep it doesn’t matter what I tried but at least i am sleeping for a few hours and not awake to experience pain .
I wish I could get a good 7 to 8 hours of good sleep..but haven’t had that for quite sometime. Have great difficulty sleeping on side to to pain in hip region which wakes me continually. ..my cat who loves to sleep on my side has to be shooed to the other side due to the pain!
I was prescribed Dothep which helps you to fall asleep quickly (when you wake in pain) instead of tossing and turning in pain.
That sounds like my nightly routine. When it’s time to change positions I am in agony, which conpletely wakes me up. No amount of sleep meds, muscles relaxers or even pains meds help. I just get up and hopefully find time to take a nap later in the day.
I am 52, and was diagnosed the first of three times when I was 22. I haven’t slept well in 30+ years. I have tried many meds for it in the past, but I am trying so hard to transfer to a more holistic approach. Recently, I bought myself a Fitbit to help remind me to be more active, record my water intake and sleep patterns. I was amazed at the results of the sleep patterns, and now understand much more why I am always tired. I am awake or stirring about half my time in bed, and seeing it in writing makes it easier to make sense of. I showed my husband (who doesn’t have any pain issues, nor understanding of them) and he was surprised. Now I can take these results to my Dr. at my next appt and show him my lack of sleep. The only time I sleep well is when I get totally exhausted-I traveled by plane recently and I slept almost 6 hours with only one interruption. I wish that was typical! Merry Christmas to you all! I wish you all health and happiness!
Chris
I was diagnosed after years of suffering when Mom found an article in a Woman’s Magazine. I took it to my, then doctor. He read it, came back, checked the pressure points and said, “I think you have fibromyalgia.” After that the doctors and I tried a lot of things to deal with the chronic and often severe pain. I was determined to commit suicide to end it. My PCP asked me to go see a pain specialist so I decided that this was the doctor I’d see, except at the morgue and he/she would see me but I wouldn’t see him/her. THAT doctor was familiar with fibro and she tried different meds till we hit upon my current “cocktail”.
To sleep at night I take a timed release morphine, Flexeril and I added (with her okay) Melatonin. Now I often get 6 to 8 hours of sleep. True I was, at first, groggy in the a.m. but after awhile I got used to it and though I am not prefibro in the mornings I can at least function to get breakfast, a shower and get dressed. I stretch before I get up. After resting for awhile I can do a little housework before I have to sit again. I tried to work at a job but after an hour and a half I had to take pain meds (hydrocodone) after 2 hours I was done. My daughter bought me a hot tub which helps tremendously. I keep trying!! and I’m still here!! Hang in there..there IS
hope !!
Hi Kay I’m just reading your story. I have to tell you that I fell the same as you, only death can give me the relief I seek. But I hang in there everyday for my husband and daughter. I truly thought this was a fairly new disease but From what I have been reading people have suffered with FM for many years. That’s not very incouraging, you would think they would have a specific medication for it by now. Just don’t give up. Fight it back.
Melatonin has helped me immensely. I took Ambian for years until my memory had deteriorated to the point that I feared EOD! I still have trouble with deep REM sleep during the night but am able to return to light sleep for a total of 4-5hrs. Whoo-hoo 😉
I hope Melatonin will help you. Sleep is the one essential we cannot do without! Hugs to you Mandy.
Yes, that’s me exactly! I only get 2-3 hours of sleep, constant pain, etc..
I too can only sleep on my side and flip flop all night long because my ears and hips and shoulders hurt. I bought “my pillow” and what a relief for my ears. I fluff it up, then punch a “hole” for my ear and can get 2 – 3 hours sleep. The good news is, I found a wonderful lady for my horse and went last night and took my final ride. It was wonderful and I got to say goodbye to Bogie in style. I am now ready to start my new life in Ohio!!
Christine
I know what that is like to say goodbye to your riding buddy! The pain from fibro has been with me for over 50 years now–I always rode, but then it became impossible as no matter how easy I took it, I would be flat in bed for two days after even just 30 minutes of easy walking–not even a cantor in an indoor ring! And throwing a blanket and saddle up proved to be impossible…then too exhausted to hot walk or groom after riding!
I unfortunately ended up disliking horses! AND I have loved horses since I was three years old and got my first pony at five. Pure love for so long. I went up to Minnesota to help a friend halter train her 3 Arabian colts. But they were not trained at all and I was repeatedly nipped, downright bitten through my denim jeans trying to groom them, then got sent sailing trying to avoid a kick. I walked out angry. Terrible way to leave my passion! The pain and resultant irritability just gets in the way. If I could JUST sleep through one night sometime! Oh just to wake up once feeling refreshed, ready to go! If wishes were horses we all would ride!
I’m glad to hear someone else has sore ears. My doctor looked at me weirdly when I told her I couldn’t get comfortable to sleep, because my ears hurt. I was beginning to think it was just me. Thank you for writing about it.
Alison, it’s always comforting to know your not only one right? ?
I’ve had several sleep studies and they have shown I do not get ANY REM sleep that’s where your body heals itself. I too fall asleep rather quickly because of meds. yet “wake” about 2 hours later. Most often I lie there with my eyes closed willing myself to sleep. I cannot find a comfortable position and keep adjusting the many pillows I use to cradle my aching body. I wake up in pain and with headaches.I’m trying to figure out a away to get a sleep chair. It’s like a recliner but it’s wider than normal with a deep layer of memory foam to cradle you. It’s electronically controlled to give unlimited zero gravity positioning.It also has the lift feature to help getting out of bed. depending on insurance they might help cover the cost of it.
I was diagnosed more than 30 years ago and have tried a whole host of med’s. You name it I’ve been on it, nothing works for very long or very well. At this time I’m being weaned off tramadol and amytriptline, so I can have dosage of Savella increased to see if it will work.
I too am a side sleeper, diagnosed 30+ years ago, and didn’t sleep a couple of hours every night before waking up in pain. I finally found a great doctor who understood. I take a timed release morphine, a muscle relaxant and I added a melatonin. I sleep great for 6 hours and sometimes 7 a night. I used to wake up totally nuts in pain, not anymore. I will continue my routine till it no longer works. Best wishes from someone who, literally, knows your pain.
I found that zolpidem ER (extended release) 12.5 mgs (brand name Ambien) has helped with sleep as well as a muscle relaxant called carisopradol (Soma) 350 mgs (3 per day, but cut in half).
Yes to this problem of only being able to stay asleep for 2-3 hours at a time. I find this Very frustrating. Yes, it is often due to the fact that my shoulder and hip on the “particular” side wakes me, and I have to turn over and try to fall asleep again. However, this is not always due to pain, but I can just “wake up” for no obvious reason. I will feel as if I have been in a Deep sleep (probably due to my night-time meds); however, I wake, and look at clock, and realize , once again, that it has only been 2 hours since going to bed. It makes the nights very long, and lonely.
I have had fibro for 30+years. I now take belsomra. 1st time to get a decent nights sleep. No bad dreams or sleep walking or feeling hungover like with so many other meds. It is expensive but hopefully will be generic soon. Hope you find relief!
I am the same way..it’s gotten worse over the last 6 months..I’m only 37, I’m so tired of being in pain and sleeping all the time..I used to be so active till I turned 28..all down hill
I agree with the ‘Flexeril’ and ‘Amitriptolene’ they have helped me to sleep, and get back to sleep when I wake; as I toss and turn all night due to bad shoulders. Rheumatoid Arthritis, Fibromyalgia, this list could go on, but you all know that. The med list could continue as well, but you all know that too, ;~) again I agree those two help.
Although if I mess up and run out of lyrica and the script has run out…and I have to go see doc etc, to get new scripts so its out a couple days to get scrip reinstated! Every thing goes haywire, brings on a serious flare from the h*((, no proper sleep messes everything up. I try very hard not to let that happen but this has been a bad year or two for me and that damn script…so pay attention to how many refills you have left when your filling that bad boy. When you only have 1 more remaing get that doc appoint made to re-up that script, it is not worth the torture to be with out!! Hope it helps.
I have problems sleeping as well. I recently purchased a cooling gel foam mattress pad. This had helped a lot with some pain while lying down. It makes a big difference for me so far. It doesn’t take it all away, but it helps! Best wishes!
You did a good and thorough job reporting on the symptoms! It is helpful to know that others know exactly what you are feeling!
Yup, you got it right.
Yep, those are some of the main ones. Also, gastrointestinal problems like IBS and GERD. I haven’t had a GOOD night’s sleep in what is now a “diagnosed” 13 years! I believe (and my sleep studies have shown) our brains are waking us up without our knowing, multiple times per hour, yet they are not conscious awakenings. And the sensitivity to certain smells, lights and noise drives me bonkers! I actually have to leave the swimming pool if there are too many people or the gardeners are running their leaf blowers. (Back to old fashioned rakes, I say!) Which is worse, the pain or the never ending fatigue????????? It’s a toss up for me!
I just did a sleep study that showed that in a four hour period my brain was waking me up approximately 32.5 times every hour. That does not give a person any good sleeping time. Now I know why I feel fatigued all the time.
Hi Linda,
I have had fibromyalgia for 5 years now. My doctor had me do a sleep study test and the study showed that I have sleep apenea. I have been using a CPAP machine for two months now and in the morning my muscles do feel better. It will last for about three to four hours and then I start hurting again. In the study, I stopped breathing about 25 times a night. My brain and muscles were oxygen deprived. With the machine, I am breathing all night. I am not sure if this is helping a lot,except that the machine keeps me breathing all night. Have you been on a CPAP machine to help you sleep?
I’ve gone through 2 CPAP machines in the last 10 years. Don’t think they were really helping, to be honest. I never felt like I was actually “asleep” with them. It was always like a light twilight sleep. I know it’s weird, but once I decided to stop using them, I felt like I was getting at least some deeper sleep at night. However, if you have OBSTRUCTIVE sleep apnea, I believe they can be a real lifesaver!
Have you considered surgery? I did after two sleep studies and my s. apnea is no longer a problem. I tried a CPAP but couldn’t stand it…I am also clostraphobic (lol I can’t even spell it!) and felt it was confining… Check with a good ENT…Hope it helps you too!
I had surgery a while after my first sleep study showed I was waking up 15 times per hour. These were not conscious awakenings, although I did have those as well. Instead, our brains “wake” us up by not properly completing the sleep cycle. We go from one cycle back to another and so forth, but not in the proper sequence in order to have restorative sleep. Because I had gained so much weight from Cymbalta and whatever meds they had me on at the time, an ENT specialist said he could cure my sleep apnea with surgery. What I did not know then and he did not explain was: there is more than one type of apnea! The “obstructive” kind can get better with surgery- usually done for those overweight. He actually went in and took out part of my uvula (that little thingy in the back of your throat) and also corrected a deviated septum. It did wonders for my breathing. However, I still had RERAS – Respiratory Effort Related Arousals – another form of apnea. So, the surgery really did not cure me, as my second sleep study confirmed. My brain was and is still waking me up, like most fibromyalgia patients. That’s why we’re so fatigued all the time! I would certainly consult with a pulmonologist who understands fibromyalgia and an ENT before ever having surgery done.
Actually that is a very interesting piece of information, as I do also believe that the reason our muscles hurt so much, is the lack of Oxygen Synthesis in our muscle cells. So, yes, if we are not getting enough Oxygen during the night, then this could also be worth looking into/have more research done into same.
For me the fatigue is much, much worse. The paim is horrible, but this debilitating fatigue has completely changed my life. I could be in bed for up to 4 days. Even during the times that I am awake,which arequires few, I still cannot get my muscles to work. Zero energy.
I was not able to work that much …. spend a lot of time in bed.
It is really limiting because you never know which day you won’t be able to get out of bed.
I’ve actually forced myself to get up and could barely make it out the shower! I ended up back in bed for another 2 days.
I experience alost every symptom. Almost all are limiting, but the fatigue leaves my feeling like an invalid.
Dearest Shaan, most of us that have stumbled upon this site share in your story! You are not alone and please for your own sake – do not despair! That you are still trying illustrates your inner strength and respect for self. Hooray for you! A shower involves more than simply standing under the spray! Break down the physical requirements – the steps you go through. Unless you have another to assist you, taking a shower (even without shampooing hair!) requires a great deal of effort when you are exhausted, running on empty and are in so much pain you can think of nothing else! I salute your brave efforts and your desire to overcome the limitations of your ‘dis-ease’! Please continue to gently pull yourself up and out dat bed! One day a shower, one day a shampoo, and one day to let us all hear from you!<3 Sending gentle loving hugs your way. You are never alone!
I found that a shower chair and having a shower hose that is adjustable helps a lot! Also buy yourself a wonderful smelling body shampoo and pamper yourself. Use cool or warm but NOT hot water. Then have a wooden seat outside the shower where you can sit and dry off with a big fluffy towel.
Those of us with fibro just don’t do enough nice things for OURSELVES.
Polly, you’re right! We don’t do enough good things for ourselves!
I have somehow become used to an average day of pain, after being diagnosed with Fibromyalgia and Chronic Fatigue Syndrome over 20 years ago. However, I find the “complete exhaustion” that comes every day with relentless fury much worse for me to bare!! Any suggestions that don’t involve stimulants? I don’t believe stimulants are the answer. I am looking for nutritional suggestions. One suggestion I got was to eat 2 Brazil nuts every day…so I do. What have I got to lose? Any other suggestions?
i am sufferring with fibromyalgia but not reliazed it until recently when my chiro disover it. i have been going to pain mainageing clicie for years and was never told about this taking nerve block needle and have relieve temp.
I had it for over 30 yrs now… I still hurt lots. I have IBS also,
I do sleep but I wake up several time in the night to use the bathroom but go right back to sleep. I take Effer XR to help me sleep so I can rest and wake up refreshed…
The bright light bother me and the sun hurts my eye.
Oh yea Brand fog just hate me… so bad, can’t remember anything.
I also takes Gabapentin, Meloxicam,Tizanidine, vitamins B12(Helps Nervous system), D3, Magnesium(which help support Essential Nerve, Muscle & Heart Function).
Hope this helps!
I’ve been on the gabbapentin..I had a lot of problems with my eyes as well as sensitivities. My optometrist discovered it was the gabbapentin causing eye issues. Its better now that I’m off it. I’ve been on so many different meds for pain, nothing seems to help. In waiting to hear back from medicinal dr.to get my license. Better for your stomach, liver, hopefully bowels too. Tired of being constipated. Started with IB..now constipation:( I am so overtired that I CAN’T lerp, but I can’t much else either. Mondays I don’t plan anything. Its rare that I have good Mondays. I’ve been suffering or years, but STILL have no proper diagnosis cause I have thyroid/hashimotos, back surgery 11 years ago that started in 1st trimester of pregancy after I had an absessed Fischer that required surgery…safest for baby was to freeze me from waist down. That freezing needle started the back pain. Since back surgery 11 years ago, my right leg hurt to the slightest touch..now I just hurt everywhere..but Drs keep pushing meds that don’t work, work short term, or just make me sleep! Lol I also have a neck injury…
I used to work out at gym until I overdid it 2nd put myself into bed for 1.5 weeks…then I found valentus beverages. They help reduce inflammation and pain, as well as helped me lose 40 lbs.
@Jacqueline – I have tried many times to join a gym because of the comraderie of the other ladies I found that it was encouraging to be with others my age 61. However, every time I have started I end up quitting because I just can’t keep up with everyone and hurt myself. The exercise leader always says to go at my own pace but for some reason even “my own pace” is too much in a room full of women all jumping around like they have never had a pain in their life! So sorry to hear about all your difficulty getting pain relief. I went for years with no relief and finally was properly diagnosed and now take pain meds, muscle relaxers, and anti- inflammatories that help with my pain. What are valentus beverages? I have gained 30 lbs from all the meds and need something to lose weight.
I am now finding some closer to my age. New to this kind of thing and just waiting to crash my PC again. I suppose there are good things about cyber-space. Yes, yes, there is as I have found others of my generation. Thank you all of you oldies, but goodies.
I may keep trying to live.
Thank you!!!!
Hi Em I’m Jill. I turn 55 tomorrow. I’ve been reading all the comments. Including yours. You don’t have to apologize to any of us. We’re all here for you!!! If you ever just want to talk or message me I’m here!!! I was having a crappy day yesterday. I just get so sick of people’s posts about things they know nothing about cause they’re not living it like we are. What’s that stuff you take and what’s it for?? Anyway big hugs!! Are you on Facebook??
Thanks Jill. Major meltdown yesterday. There are times I would like to melt a way. Loneliness, guilt and shame are destroying monsters. So many days I just sit and stare to the point of losing track of time. Not feeling sorry for myself. Have grown weary of reaching out only to be rejected because I can no longer compete w/ money and I have grand children I love dearly. Vicious attacks from a D-I-L who just does not understand.
No more murmuring and complaining as it does not help me nor anyone else. PTSD so bad I don’t know what to do anymore.
I cannot make sense. I am not on fb.
I did get a Christmas car designed for this year. I have been designing one as this is the best I can give as a gift-gifts of the heart seem to mean so little these days. I still do some artwork as I can. When love not enough-yes, old gloom and doom come knocking I just want to fad a way some place where pain does not exist. If wishes were horses beggars would ride.
thank you again, Em
EM, I am so sorry. I suffer with fibro and was properly diagnosed in 1986. I just turned 66 and today is a bad day for me with the pain. I can barely move and am thankful that I can do a little xmas shopping on Amazon Prime, cause I can rarely get out and just walk the mall to find little things for my grandkids. I am tired of taking pills, but also am thankful to have a doctor who recognizes chronic pain and will give me hydrocodone for bad days like today. I also have a supportive husband and he takes good care of me, so I have positives in my life. However, my husband and friends still can’t imagine coming out of a shower and used every ounce of energy for the day. Ugh What helps me is to set small goals daily so that I can get a positive reinforcement by achieving them. I have osteo arthritis in knees and am on life time blood thinners for acute blood clots this year. I hope you can find at least one positive in your life that gives you joy (am sorry about your dil) and wish you a good holiday season.
@PollyannaLeonardis – Sounds like you have good control over your pain. I understand your nighttime ritual. Dr started me on Morphine because I couldn’t sleep. Woke up in terrible pain and muscle spasms but now I sleep through except for having to use the bathroom when I wake up. Nice to have that night pain in check. Wishing you a nice Thanksgiving.
I am yet to be diagnosed for FM..I have an appointment to see a specialist in January. I have had the symptoms for years and I am now at a stage where I could just sit and cry. I still work full time but find the drive into work really hard. Ii am fine while I am moving around its when I first get up and after I have sat for a long period. My elbows neck back ankles knees and hands are very sore. I wake most mornings with a head ache…I only take paradox extra. I can not take codine as I am allergic and I have asthma so shouldn’t take ibuprofen, but I do when I am desperate. I do have a gel to rub in which helps…I can not wait to get to see someone who might be able to diagnose me. I have had blood tests which did not show elevated levels of inflammation in my joints. I have been told it does not always show.
Carol, are you seeing a rheumatologist? Do you have to work? I’m so sorry for all your pain ????????
Carol, the good news will be when you get the diagnosis. You will FINALLY find out that you are not “crazy,” and that all these weird, horrible symptoms have a name. Then you can try to find the right collection of medications, supplements and therapies to give you some relief… Good luck!
Isn’t it amazing that after all these years we fibro patients are still not taken seriously? Just try saying you have cancer and see what happens. I’ve had debilitating fibro since 1989 and the reaction usually is, “Oh…” (blank expression; followed by change of subject), but the minute I was diagnosed with cancer (in remission now) the change in attitude I experienced was stunning. Everyone reacts like those old b&w movies where the wife tells her husband she’s pregnant and he acts like she’s made of glass! Unbelievable. To add my two cents regarding sleep problems, I’ve found that Ambien ER 12.5 (generic is zolpidem) works very well for me. The extended release (ER) version helps you go back to sleep if you wake up to go to the bathroom. I’ve also been taking a muscle relaxant called Soma (carisopradol) 350 mg. 3X daily, along with my pain meds (opioids – although they’re clamping down on them even though they work wonderfully for many). There’s also a topical ibuprofen called Voltaren (diflunac) which you can apply to the sore spots. It’s supposed to be prescribed only for joint pain, so if you are also diagnosed with arthritis it will be covered by insurance and it works for temporary relief of fibro pain and, if you don’t have arthritis, you may be able to get a pre-authorization from your doctor over-riding the insurance to cover it. However, regarding the Ambien ER, it’s important not everyone can take it like the flexeril and then wait an hour to get drowsy. I found I need to get ready for bed and then take it just before I’m ready to actually go to sleep. Otherwise I half-sleep and start what I call “sleep-eating” – that is, the next morning you find chocolate bar wrappers under the pillow and have no idea how they got there! Hang in there sisters.
I really have to reply to this one. I took Ambien ER and did massive sleep eating. One night dreaming I was at a party and making Quesadillas for every one. I cooked 5 of them, almost burned up the pan, tried to take it to the trash, tripped and fell down stairs into bushes. Never woke up, but woke in the AM to leaves and dirt in my bed and Quesadillas all over the kitchen. Decided to stop taking it.
Good Day Chris!! Your experience w/ the Ambien was awful. Your description of your experience/adventure gave me such a vivid image that I started laughing as I saw this taking place in my mind. thankful you are okay and apologize for the laughter at something that could have been tragic.
Falling into a bush and being covered w/ leaves-quite the party!!!!
Oh yes, I love the laughter. I can look back and laugh about my sleep eating on Ambien. Not only about the leaves in my bed and I did break a rib in the fall but many time woke up to pieces of sandwich, cookies, string cheese, etc. The falling down the stairs was the last night I took Ambien. So, again, no sleep
Oh, this is so funny. Thank you for sharing. You made my day!
I know this is not suppose to make me laugh…but thanks for making me laugh really hard.I have had similar situations on ambien making food and not remembering I made it until I open the fridge the next morning.I have moved furniture cleaned out drawers you name it..Instopped it 2 years ago just for that reason as I did go in the car to bring a small table to the dumpster and that really scaird me as I drove the car in that state of mine very dangerous.I tried lunesta also with bad side effects vivid dreams .I would wake up crying and covered in sweat .so done with all of those meds
If your doctor isn’t listening to you when you explain your symptoms, you should fire him/her. Your doctor is supposed to be your advocate, and don’t settle for less. My doctor was tenacious, and would not give up until he had answers for me. Looking back, I can think that I had symptoms for about 40 years. I went to several doctors and specialists until I found ones that who would actually listen to me. FM is a real chameleon, it can look like so many other illnesses, and that’s a big part of the problem. My doctor finally tracked my problem through my records. An outbreak of Epstein-Barr Syndrome was one of the major tip-offs. We all carry the virus, but we don’t all have the flair up. We finally discovered that about every April, I would go through a really bad bout with extreme fatigue and flu-like symptoms. After my doctor tracked my records, he was finally able to diagnose me properly. Don’t forget, your doctor works for you. If he/she isn’t listening, and not acting in your best interest, find another. Best wishes to you, I hope you find some relief.
You got that right. Walk right out the door if he isn’t listening to you and you sit there and do all the talking and doesn’t do anything else. He’s not the doctor you want.
Will you be going to a rheumatologist? Sounds like you’ve got it. Could be Sjogren’s Syndrome too. Blood test: Sed rate. ANA.
I would be very interested in what type of dr. your going to and also if your get any relief. My blood test show inflammation all the time, I hope you find relief. My email is [email protected]
Norma, I go to a rheumatologist, and although I get relief, I am never pain free. Does that answer your question? ????
Carol I’ve not heard you shouldn’t take ibuprofen when as matic, why?
Friend of mine has major nerve problems with her feet? Is this part of the Fibro issue or something not related?
Sherry, yes it can be. It’s called neuropathy. It’s very painful.
I was diagnosed in 1986 and am now 73. I have all the symptoms even including the muscle spasms in chest that feels like a heart attack. I took Cymbalta for several years and it gave me back at least 60% of my life. I am an equestrian and have fought for years to keep riding. This year I started Lyrica and it helped a lot with the neuropathy. Alas, my MD says “no more riding” as I got a compression fracture in my spine the last time I rode due to the muscle deteriation.
Chris, I’m so sorry you have to give up something that brought you such joy! What else do you enjoy doing?
Hi Chris. I surely do miss the horse. I worked as a wrangler/cowgirl/guide in Dubois, WY. Lived my dream. 200 head of horses so this old country hoke was in horse heaven. the plus was I did not own the horses-just loved and cared for them.
Not at all sure what is going on w/ the old bod today. My legs are swollen and itch something fierce. Never know what fibro will come up w/ next.
I am thankful as I do have lovely memories and as I can I paint and write poetry. ——Allen Poe. Also enjoy singing and have found Tai Chi to be helpful-when I can do thus,
Almost a New Year. I am thankful for this site and also sad that there are so many of us who live w/ this disorder.
Some days are better than others. Since I am 65 I guess I am still a youngun’. Any of the meds caused horrendous side-effects. I have a wonderful pain specialist and do get trigger point injections and absolutely no steroids!!! This doctor is so supportive and gentle which means a lot-he understands PTSD.
Peace and Blessings to you and some gentle hugs from a lover of horses. Sorry there is no way to attach any of my artwork. I no longer do commissioned work.
We do our best to encourage and not go down the “self pity” path as this does no one any good.
I am soon to move cross country from Calif to Ohio to live with my kids. I just cannot keep up with feeding, cleaning the horse. Will have to put her in a stable-breaks my heart. Then, the problem starts with picking new md. and new insurance. I am actually looking forward to the move and starting a new way of life.
Chris, I’m so excited for you!! I hope you’ll have help packing, will you hire s mover?
My friend will help me drive a uhaul cross country. I am not taking most of the furniture as I want to start over in my new life. I get to finish and design my basement apartment. I am really excited about it
Yay!!
Some people can also have major pain in their feet from diabetes. I’ve been told that pain and tingling in the feet may be the first symptom for some folks. That can actually be checked with a blood work up, unlike fibromyalgia.
Wishing you the best in your move Chris. I miss room to roam and living in such close proximity w/ others is difficult due to all of the noise. Neighbors can be so nibby. Nothing in the lease stating I am required to open my door to another. I speak politely when spoken to and keep on going. I truly do not trust others. My issue. I trust animals much more. I paint them, frame them and do not need to feed and water them. I do have many houseplants and beautiful flowers come Spring. I like being surrounded by what I feel are safe things.
I have lived in Shadow Hills, Ca in the northeast San Fernando Valley since 1967. It has been a beautiful, safe, quiet equestrian neighborhood all these years. I volunteered on the homeowners assoc. for 20 years. I also had a pet sitting business and walked the “hood” at all hours and never felt threatened. Now a new faction is moving in, building McMansions and negating our horse keeping rights. Crime has come with them, breaking into cars, houses and mailbox theft. I am so sad to see this happen but it is time to move on as I can no longer participate in the day to day activities. I have had a great life that is now taking a left turn. I feel I am on a new adventure, a completely different lifestyle and am starting to get myself excited about it. You must keep a positive attitude and find something to look forward to. Anybody out there in the Cincinnati area (I am moving to Amelia, southeast of Cincinnati and would love to meet new people that understand what is happening to us.
Chris
Chris
Hey I live in Canada it usually takes me about a half hour to 45 min to get out of bed. My feet are so sensitive and sore it hurts to walk most of the time! My brain doesn’t work much and it makes me want to cry all the time. My joints hurt all the time. My question is what else can you take besides lyrica? I got very bad side effects from taking it. What else is there?
Sophia, I live in Canada too (Victoria BC) and there are many options available for us here. Your best course of action is to talk to your doctor about it or getting a referral to a pain specialist if you can. I have tried several different medications since my diagnosis including: Gabapentin, Cymbalta, Amatriptyline, Nortriptyline, and Topiramate. Some have been effective for me and some haven’t; sometimes the side effects are too difficult to handle. Everyone is different. There is also the option of trigger point injections, which provide relief for some people, although these actually caused more flare-ups for me. I hope this helps a bit and you’re able to find some relief from your pain soon.
Please excuse my succinctness when I saw the Elavil comment I did not gain weight but for a while I turned into one of the meanest, nastiest, most hateful she dogs and no one could figure out what had gone wrong w/ the quiet passive person that others had known prior to this horrid drug also true w/ Cymbalta, and Effexor!!! It was decided that my depression is cognitive and treatment resistant when it comes to medication.
Yes, we all react differently to meds. Whew, I thought I had encountered an entire personality makeover.
Cold and dry today so ouch to the googal. Back to my rice bag and some warmth even though it is not at all good at conversation. Just as well-even soft music hurts.
Whiny , but not indulging in self-pity. I live alone.
The only thing that has ever really helped me is opioid medication, although there are new guidelines in U.S. requiring reduction of meds arbitrarily, whether or not you’ve been sucessfully taking them for years and passed all your drug screens. That’s been difficult. I’ve found that those especially combined with Soma (a muscle relaxant) gives some relief in order to complete activities of daily living. Ambien ER has finally helped me get some restorative sleep, but it sometimes affects people weirdly. Must be taken when actually ready to go to sleep, not like some others (amitriptylene (elavil), for example, which allows you to gradually get drowsy). I must sleep in one position all night, but it allows me to get up to use he bathroom and get right back to sleep. A gluten free diet has helped me, too and an anti-depressant (Prozac). None of the so-called fibro meds have helped me, Gabapentin, Lyrica, Savella, etc. have given me severe side effects and I’ve heard too many horror stories about Cymbalta. Elavil caused me to put on 60 lbs. I’ve also recently found that Tumeric has helped with some other issues not necessarily related to fibro, but everything seems to affect fibro. Heating pads, electric blankets and jacuzzis are life-savers. Massage, not so much. I was diagnosed in 1989, so I’ve tried it all including chelation therapy, mercury fillings removal and even magnetic mattresses! All a waste of time and money. Hope this helps.
I’ve been taking amitriptilyne for 18 years, since I was diagnosed. I also take Effexor and Wellbutrin for depression. I just recently received my medical marijuana license and ordered 3 different kinds that are recommended for fibromyalgia for pain and for sleep. I was prescribed 1 g a day to start. I wanted to consume it as a normal prescribed medicine so I made canna butter with all three. Hard work but worth it for me. I have no desire to be considered a pot head and besides I hate smoking in general and I hate the smell of Mj smoke.
The first week I started using it I thought I had made it too strong or that I had taken too much even though I only took half of the half of the amount of butter/oil recommended. I was dizzy, headaches, having nightmares that were so intense that I cried out loud at times my husband said. My nose and face felt numb at times. It was discouraging. Not another form of pain relief to strike off my list!
By the end of the week it dawned on me that the symptoms I was experiencing were probably more related to the fact that I had forgotten to take my antidepressants in the morning as usual AND I quit the Amitriptilyne cold turkey!! Bad idea. I had tried before very gradually but the side effects were too great to keep going.
These past couple of weeks I have been playing around with using the different strains at different times and at in different dosage. The side effects are minimal and I have less appetite so I’m losing weight at about 2-3 pounds a week for the past 3 weeks. I was worried that the mj would increase my appetite as that is often noted as a side effect but the opposite has happened in my case so far. It may be because of having stopped the amitriptyline more than the mj. I have steadily gained weight since I started taking it and although at times I have been somewhat successful a bringing it back down a bit it seemed to still continue to increase which causes more problems as the extra weight put pressure on your joints etc and it gets harder to move which causes more pain. Weight loss for me has always been very difficult to achieve since my diagnosis. Now it’s happening and I’m not even trying much. It’s just that my appetite is done now. I pray that this trend will keep going as I have 40 pds to loose to get back to my pre-fribro weight!
I can’t say that I’m sleeping longer, maybe even less but at the same time I don’t feel so tired during the day. My day naps can be just a few minutes instead of a few hours. I feel very well even though my hips are still sore. I keep forgetting to rub some of the oil on them to see if it would make a difference.
I gained 10 pounds the very first week I was on amitriptyline. Not kidding! Was so shocked when I looked at the scale.
Yes Amitriptyline made me so hungry i could have eaten cardboard..I dont know how I would get through the day without it. Fibro has
Been quite a journey. I was so tired of being humiliated by my PCM that I went to Cleveland Clinic to Rheaumatology Dr.Gota is over the fibromyalgia and she was so kind and told me its not in my head and to buy the cleveland clinic book about fibro and give to my doctor to educate himself. He was 2 years younger than me and compared my health to his saying well I run 7 miles a day…the sarcasim he had..was disheartening. Taking it one day at a time..
I find this information very helpful and validating my issues are real. I lost the ability to work at 43 and my husband five years later. I believe he could not accept a sick wife. Over the years it has been hard because people can’t accept that all activities for me end up with a maybe answer because I never know when I will have a good day. At 70 many things are too painful like shopping and cleaning. The biggest thing for me was accepting my limitations and being very grateful for the days with less pain.
I cant take Flexeril because I feel so groggy the next morning. I take Ativan 1mg when I get restless leg syndrome and it helps. I also take Hydrocondone. I try and cut them in 1/2 and take the least amount possible to take the edge off so I can work. I have tried othe medications and they do not work. I also wake ever 2-3 hours but usually go right back to sleep. I find a heating pad helps at times. I recently have been under a lot of stress so I am haveing a LOT of bad days. Any other suggestions of something that might help with the paid is appreciated.
Nanette, do you take any vitamin supplements? If you don’t, I would highly recommend taking magnesium, vitamin D and Omega 3. The magnesium especially is wonderful for muscle spasms and reduced my restless legs significantly.
A comment on Flexeril-I turned into a mega “She Dog”. I use liquid magnesium citrate and it has helped-also much less expensive than in capsule form. Altho in w/ the laxatives so start slowly. I have shared this w/ others and it has helped.
Sophia I go to a great pain management clinic.
I take Nucynta ER 150mg
Twice a day. And then I have hydrocodone I can take up to 3 a day. I take an antidepressant, anti anxiety and a muscle relaxer. It’s a pretty good blend for me. Oh and Lyrica too!!
Jill,
I’m on fb and am 56 it would be nice to have a friend who understands my pain if you want to reach out to me. Penny Starkey, NC
Hi Penny Starkey,
How long have you had fibro? I am on my 20th year. Your post caught my eye because 4 years ago, I was caring for my Mom, working and so tired and so stressed, I decided to go to NC for an art workshop (something I love to do).
The 1st year I choose to go around my birthday so I wouldn’t feel so guilty for leaving family behind and going by myself. Only worry about me for a change.
Well, it turned out to be such good therapy, I have been going every year to different place in NC for a new workshop. I always go somewhere at the end of Oct to the beginning of November. Then I spend 2 weeks meandering to the workshop – enjoying the workshop and then wind my way home to Jacksonville Fl.
I always go to NC, I love the people, the art, and the mountains!
When I saw you were from NC, I decided to say hi. I will visit your fb. I never considered befriending someone in the same achy, cranky, crappy boat that I boarded 20 years ago.
Nice to meet you
Alice K. Jacksonville FL
I tried Nucynta in Dec. 2016. It gave me severe vomiting and diarrhea for a week after stopping in 3 days. Now we are in Feb. I am just beginning to eat. I lost 30 lbs. since Dec.
It is so reassuring to hear all of these comments!
I was diagnosed 20 years ago and every day, I awake with hope in my heart that this will be the day it goes away!
About 8 years ago, I awoke with no pain at all. It was well into the afternoon before I realised what felt so strange – I was pain free and feeling “normal”! A strange phenomenon and I have absolutely no idea what situation existed to make it happen (if only!) The next day it was back with a vengeance of course, but hey, it was a lovely experience! Have tried at least a dozen therapies and spent oodles of money to no avail, so now I am just living with it and hoping.
i found a severe thunderstorm helped my symptoms. three days of no pain followed by two days almost free. then back to normal. my friends wonder why i keep praying for rain!
Wow Heather, that’s unusual. Rain definitely increase my pain. I’m so glad you get some relief! ????????
Big Smiles!!!! I get it…how delightful that some else does as well.
Try a humidifier for those rain free days. Works for me real well.
No longer ask doctors about help for fibro as all they want to do is prescribe meds that mess this senior citizen up horrifically.
The holidays are no longer holidays. Hit the big 65 and no big deal. Days slip into nights have not getting restful sleep. So many things I want to do. This is my retirement like it is for others.
No self pity just the realization that my once full and active life is gone. If I were rich it would not change anything.
I also have been told it is not uncommon for people w/ PTSD to have fibro-throw in depression and anxiety. What a mess.
Sorry to be a toxic person.
Em, don’t apologize for how you feel. I’m 61 so I get it. We may be a hot mess, but we have each other…gentle hugs to you. ????
Golly Gee, someone younger than this OGM. More like a “cold mess” though as the cold and I are no longer companions. I always liked the cold.
I do draw and paint now for my own enjoyment and not professionally. I also write poetry. A friend of over 45 years now (the only “true blue” I have ever had) calls me —— Allen Poe.
Does your family treat you poorly? Lots of reasons I do not get included in the Holidays-it is all about the “bucks”. If I were rich I would be eccentric. I am not, so I am weird. I live in an apartment and can take care of myself so I am not a burden on anyone. I am just here w/ a lot of love and love seems worth nothing. I have special kid drawers for grand children that do not come.
If given the opening I can participate altho under so much stress and we both know what stress does-I feel lesser than because I am “old” compared to others.
Others in the family have nice homes and it seems I am the family failure.
Robin, I see your smiling face and I smile back.
A whole bushel of gentle hugs to you for when you need them.
I was not included in Holidays last year or the year before-it no longer hurts so much.
Wishing you a wonderful Holiday Season.
Undoubtably, you will hear from me again.
I will take those bushels of hugs!! ????????
Thank you Robin! I came across all of this by accident because of PTSD.
Perhaps it was meant to be as I have reached the end of my rope and there is no knot…possibly have found a knot.
I’m 66, emergency health issues have drained our savings, and our retirement years are not what we had planned either. While I can understand how you feel, and you have every right to express yourself, it sounds like you’ve just given up. Why? Are you going to let this define your life? I have the same symptoms as everyone else, but I’m determined to work through them and have as “normal” a life as I can. Sure, there is a lot I can’t do that I once did, but that’s my problem, not everyone else’s. Yeah, I can’t plan things in advance too much, but the people who know me accept that. It would probably do wonders for you if you’d try to brighten your outlook.
Practice what you preach!! You do not know any thing about me and I have not given up and I do brighten the days of others. I also have other disabilities that keep me from a lot of things.
Before you judge another it may do you well to think about your words!!
Shame on you for being so judgmental Mr. Cuff.
I too have not given up. I get up every day with good intention. I have been a caregiver for the last 2 years (patient passed July 1) and it really stressed me so now have bad flares of pain and IBS diarrhea. I still have to get up, feed the horse, clean the corral, mix the feed for next day, etc. But, my friends also know I cannot do any better than “maybe” if invited anywhere.
Chris, I can’t imagine how sad it is to lose someone you’ve cared for for 2 years. Stress just throws us into a flare and it seems like pain on top of pain. I’m glad you have your horse to care for, it gets you out of bed. I’m proud of you! ????
Yes, having a horse makes me get out of bed every day. The person I was taking care of was my best friend of 55 years. I am so happy to have found this site. I did not know that others suffered from Some of my more extreme symptoms. I am just coming out of 2 months of not being able to leave my house due to the diarrhea, now it is gone and I went into a horrible pain flare, but I was able to be up all day today and outside!!. I am still in hopes of riding my horse again someday. Never give up hope!
Chris, I sure hope you get to ride again ????
Rain today. Physical pain not as severe. Mental pain nearing intolerable. No longer included in Holidays either. It has been said that we reap what we sow. Seems sowing love fails as it is all about the “bucks”.
One of the unfortunate and very sad results of having a chronic illness is being isolated by friends and family. In many instances it is simply because they do not know how to act, or what to say. You’re right about reaping and sowing, but some people haven’t figured that one out yet. We hope you have a much brighter day ahead of you.
We?
Sorry, yes… we at FibroNewsToday.
Hello, I just found this site and appreciate all your comments. I am in Colorado Springs, CO and am on medicaid after I had to retire at 62 due to Fibro. Medicaid does not cover many of these meds so I just take melaxicam and tylanol with my metformin for diabetes. I have sporatic pain thruout my body, brain fog, & severe exhaustion on bad days. But I have a roof over my head, 3 silly dogs, and food in the pantry. On good days I can get out for several hrs but pay for it the next day ! I tried exercise classes but the pain the next day was horrendous so I just do lite yoga stretches each day. I sleep several hrs but with a lot of pain and getting up in the morning is an adventure in itself, lol. The dogs wait patiently for me to get my limbs to move and I love that they do their silly dance when I accomplish it. Have a better day today everyone !
I was diagnosed with Fibro in 2003 and suffered with insomnia for years. I had mild trouble falling asleep but was waking up constantly from pain/dreams and was unable to fall back to sleep for any significant amount of time. Then I would wake up exhausted and sore. I was on combinations of klonipin, flexeril, melatonin, lexapro, cymbalta, gabapentin, you name it. Finally, after a sleep study, consultation with a Sleep/Pulmonary specialist, a Neurologist and my GP, I was placed on Topiramate(migraines), Flexeril (pain) and Zolpidem (sleep). I never had such a good night’s sleep in years.
Hello, Debbie I use to take Flexeril and it did help with the spasms in my back and legs. I will have to see if Dr will prescribe it again. Medicaid won’t give zolpidem. Hate getting so little sleep that each day I feel muddled & not quit sharp. Will try to get Dr to find something that might help with nighttime pain.
now that I no longer receive Medicaid I need a secondary to pick up the slack. Ended up w/ half of my former deceased husband’s which bumped me out of medicaid by a few measly dollars. I have 3 adult children w/ their own lives and I don’t want to leave them w/ my debts-so far I have no outstanding debts.
Anyone have any suggestions as to how to go about getting a secondary insurance? I am stressed to the max and can’t even think. My children do not know and I don’t want them to know. I don’t want to be a burden on them or anyone else.
how can I be his widow when I divorced him??? So confused. Spent Christmas alone because my children need to keep their inlaws happy and their wives/husband pleased. I understand that I am an embarrassment to them because the other in-laws work and own nice homes w/ property. Their father messed me over and still is-what do I do? this definitely blind-sided me. I have looked online-so confusing!!!!!!!!!!!!!!!!!1
Em, were you married for at least 10 years? Have you contacted the social security office to discuss this with them?
I was married 14 years. I called SS and they told me to call medicaid and Medicaid told me to call SS. A ping-pong ball. I did receive a letter from Medicaid saying I had lost my benefits there and now have SS and to contact them. I do have Medicare, but I need a secondary as I have 3 adult children that I do not want to be punished when I am dead because of unpaid medical bills. No one will give me any direction. I have medicare A and B which means nothing to me. No doctor appts. until April and the only med I take is Nature-throid which I pay for out of pocket any way. Allergic to the synthetics. This came crashing down on me December 15 after being told by phone by Medicaid and Medicare I would still receive Medicaid. Divorced him in 1995 and now it is like he has moved back in w/ me even though he died 3 years ago January . I certainly am stupid and half of his life’s earnings was just enough to take a way the Medicaid. The pain is horrendous and today I am to go have Christmas w/ my grand kids-I will fake it.
Just frustrated. Received a nasty email from some one calling me friend getting chewed out-her issue. I did all I could for her and will do more nor be guilt tripped into pushing myself beyond my limits by a user.
Sorry-on overload.
Just enjoy those grandkids and go easy on yourself
Better believe I did enjoy!!!! Grand kids are my new lease on life!!
Em I told you what to do and how to do it. Go online to Medicare.gov and find a supplemental advantage plan that will probably cost you nothing. Google the folks at SHINE, get their phone number if you need help navigating the site and they can walk you through it. All is not lost. You just have to go online and DO IT…You can compare plans side by side. Or, if you need additional help, contact a reputable health insurance agent in you area and they can also help you!
I know you did and I can’t find all of your info. what is SHINE please? I need to do something. I will-I just need to psych myself up and “get it started”. Sometimes doing things is so overwhelming. SS and Medicaid had me in tears because they do not have answers.
Come on OGM you can do what needs to be done!!!
I am so sorry. I am so, so tired and want some sleep and focus. SLEEP?? Perhaps a hit upside the noggin’ w/ a 2 x 4 would help-my attempt at some comic relief.
Folks her have been great and I do appreciate all of the encouragement and support.
Currently I feel like a robot…:)
SHINE is an organization that is staffed by volunteers to help you through the maze of Medicare and Medicare advantage plans or supplements. Google SHINE and see if there is a number for them in your area. If you need additional help, all you have to do is call an independent insurance agent (I would go with an independent as they always have their client’s best interest at heart versus a “captive” agent who only works for one company. I was an insurance agent for 15 years, so I know a lot about it.) They will ask you about your medications and doctors to make sure you are getting the best plan. This info can also be inputed by you when you go to Medicare.gov. It is time consuming, so do it on a day when you have the energy to be online for an hour or so if you are doing it yourself. Good luck!
I am really glad I read this. I was starting to believe I was crazy (which is how my doctor usually treats me). It sucks that anyone has to suffer with this affliction, but it is reassuring to know that there are people who share my experience.
Ronda, you are not crazy! This is a great community here ? You may want to consider finding a new doctor who treats you better. Do glad you found us!!
Just a heads up for those whose insurance won’t cover zolpidem (generic Ambien) or any other med, actually. You do NOT have to be a member to use the pharmacy at Costco. My insurance would not cover zolpidem, so I tried Costco off-insurance price and was surprised that a thirty-day supply was $16.00. You can also go on line to find a list of the cost of any medication listed from lowest to highest. Costco is not listed by name, but by a euphemism like Warehouse Club or something like that.
Good to know Maureen, thanks so much for sharing!
I would that ambien would have helped!! I took it for 3 nights and could not figure out why I was so nauseated and numerous other thing-thought perhaps I had some kind of bug. by the 3rd day I realized I started to feel better. Duh…called the pharmacist to find I was having side effects to the Ambien altho the symptoms are rare. I had taken Ambien years ago and it had helped. Not anymore!! I will deal w/ sleepless nights after those rare side-effects. Fibro is symptomatic enough. Insurance paying for a 30 day supply of 5 mg. wasn’t much. Just now have the guilty’s because it did not help and exacerbated the problem. Our bodies do change. For a brief time I was feeling some better and now I am down the tubes awaiting to emerge once again.
Apologies…was feeling worse by 3rd day.
I just want to say that Kaiser doctors will no longer give Zolpidem to anyone over 60. They will not give me any type of sleeping pill so I do not sleep well at all. I tried the Northstar Nutritionals sleep med. It really worked well for 4 nights then no more. I still use the Soothanol X2 for muscle spasms and it works well for me
i just sit at home and wait to die. im 41 years old and my doctors cant help me, it has been five years not working and no one will help me fill out disability forms so i have no choice to sit at home and hopefully die sooner than later. I get about 3 hrs a sleep at night, i get so sore i have to walk with canes till noon and cant dress my self till the afternoon due to hip pain. I had spinal surgery last year on top of fiber and my spin is also filled with arthritics. I have spinal stenosis as well as two bulging discs. one in lower back and one in my neck. I have come to terms with what my life has become and quickly fading in to the black, im a burden on everyone around me and i do not want to live. Oh god if you hear my call. let me go. From the age of 20 being crippled for two years in bed till now at 41. It has been a long fight but im ready.
Hey Mike, I hear your frustration and your desire to die, but since you’re still here I have to believe that God has a purpose. Is there a lawyer in your area that specializes in disability? When I had a disability lawyer they filled out all the posteriori over the phone and mailed me anything I needed to sign. Don’t quit
Hi Mike. I have been saying the same prayer. I would that there were some words to help-God does hear our prayers. My prayer for you and I is that the God of all Gods will provide the strength and help we need-only God knows what is best.
Mike, Definitely hire an attorney and file for disability! Be sure to ask if there are any costs up front. Most will NOT charge you for the initial consultation, nor will they receive any money until you are approved- which comes out of your disability award. You’ve paid into the system for exactly this reason, so DO NOT FEEL ASHAMED OR EMBARRASSED about having to file for disability! You did not ask for this horrible illness, nor did you do anything to cause it. My depression was somewhat alleviated by FINALLY being approved. (At least I knew then that some money would be coming in…what a relief.) Please understand that it is a long process and you will need documentation from your medical providers, which your attorney will get for you. It is not uncommon to be turned down at least twice, before going in front of a judge. Start now, as the process can take 2-3 years OR you could be approved in as little as a year with the medical issues you have. Don’t give up on the process and continue to fight! I know how you feel. Some days I wonder what my purpose is and why God has put so many challenges in front of me. The pain and fatigue are relentless. I just try to remember “All sufferings have their rewards!” Good luck and God Bless!
Well said Denise!!
This illness is so hard. Ive got nobody. Cant have facebook anymore cos suffered domestic violence. So had to leave my hometown. My house. Friends. Im now in southeast england. Very lonely. Im on morphine. Diazepam. Duloxetine. And for sleep phenergan. An antihistamine. Works wonders. I can sleep 10 12 hrs.
It is really hard Michelle, I agree! Could you set up a Facebook using a pseudo name? I’d love to add you to my private FB group of chronically ill women
Hi Robin, would it be possible for you to add me? It is so helpful to hear that I am not alone and that I’m also not alone with the thoughts….
I am so sorry you have so much to deal with. I like Robin’s idea a pseudo name for facebook. You need to have connections and build a support team . If you absolutely don’t have friends or anyone, use facebook to try and generate some friends. I have a FB page called Fighting Fibromyalgia with Kim, Karen and Andrea. It is a very supportive and encouraging group. I post a lot of Robin Dix articles because they are so relative and our members benefit from it so much. She is a great writer and captures the essence of fibro that helps many people. We have over 400 members and they are very caring and would listen to you. Private message me your name you want to use and I will approve you because it is a closed group. Karen Anderson or email me at [email protected] I want to help you.
So nice to read this article and know I’m not alone! Trying to explain the bone deep exhaustion to anyone is usually difficult to do, and not feeling rested on waking makes doing anything a struggle. I only faintly remember what it was like to get up and not be hurting.
Stephanie, you are definitely not alone! We totally get it
I understand that I will never have regular sleep ever again and I accepted that when I got diagnosed in 1996. I meditate and take Melatonin with Vitamin D most nights. I meditate and take my vitamin D an B and two glasses of water when I get up. And smile that I woke up! I plan my day the night before and give myself 2hrs to get ready for work.
That’s awesome!
I have had, until very recently, good results with the amitriptyline and gabapentin combination. I think it was one reason I was able to go back to work after being diagnosed in 2010, with confirmation of rejected (by me) diagnosis by a rheumatologist. She is the one who put me on the combination of drugs. I was diagnosed quite quickly because I was in the middle of a workman’s comp claim and was not getting better. I had worked for about 15 years for this hospital and they knew I was not faking. So I was very, very lucky. Unfortunately in early 2016 I started having more brain fog and stress because of my high pressure job of running an assisted living facility and retired in July of 2016. I will be talking to my doctor at my next appointment about my sleep issues. I hate Ambien and melatonin which both make me want to crawl out of my skin. I had a “mini-stroke” at age 26 due to migraine headaches and with 30 years of responsible narcotic usage when started having the widespread pain, my doctor has continued to prescribe narcotic pain medication over the past 6 years. I rarely use more than two Tyl #4 a day. I also augment with Flexeril on especially bad days and an occasional third pain pill (or half) a day. I am now 59. I worry about my 3 daughters as 2 of them have migraines. I also was diagnosed with dry eye syndrome, restless leg syndrome (after sleep study), sleep apnea, costochondritis and vulvodynia all before being diagnosed with the fibromyalgia. I worked my entire adult life starting at age 18 in 1976 until July 2016, except for the two years 2010-2012.
Oh I forgot! My memory foam adjustable mattress purchased on line from Costco helped the tossing and turning. I love my bed (unfortunately DH hates it!). It was about 1/3 the cost of a Temperpedic. It improved my “in bed” pain by 90% the first night I slept on it. I had to get up in the morning because I was in so much pain. I put my head up a bit and my knees up a bit and it really helps.
I love my adjustable mattress also. It really helps with tender points
I was wondering if anyone else has the sensation of “sandpaper sheets” when trying to go to sleep? Even my pajamas feel tough against my skin. I purchased new ones…same thing. I know there is something call allodynia (spelling) but what can I so to help this? It keeps me awake!!!
Donna, here’s some good info:
Allodynia
I’m hoping my post will give some hope especially to those who feel they have to take drugs to survive. Morgan Freeman, a spokesman for Fibromyalgia says: “I only have one life, and I will not let Fibromyalgia take the joy from living it.” I agree 100%! To give you some background, I am 75 years old, married to a supportive husband, and am still self employed, working as an accountant. (Clients won’t let me quit.) I get lost if I back out of my driveway crooked so have quit driving. I have type 2 Diabetes, have been agoraphobic since age 11 and am dyslexic. I am unable to take any kind of pain medication, many vitamins and supplements. Baby aspirin and Vitamin B12 both cause bleeding. Gaba (the supplement) caused painful bumps in my hand. Advil PM kept me awake for 48 hours straight. The seasick patch caused temporary blindness. I was diagnosed with Fibro 3 years ago by our chiropractor but believe I’ve had it much longer. An uneducated Kaiser doctor disagreed but at least ordered a sleep study where I was diagnosed with severe sleep apnea. I was put on a Bipap and with a recent test, found I am not getting enough oxygen at night. But using the bipap and oxygen, I have no problems sleeping soundly 7-9 hours a night without waking up once. I am still exhausted upon waking but don’t take naps. I was told about Ginevra Liptan, MD at the Frida Center in Portland, OR who diagnosed me with severe Fibromyalgia. She has it herself and has taught me so much. Her latest book is entitled the Fibro Manual, a Complete Fibromyalgia Treatment Guide for You and Your Doctor. From her and my fussy body, I have learned sleep apnea is often a symptom of fibro. Ask for a sleep test! I have learned diet is vital so by going Paleo (eating no processed foods), I have reversed my diabetes. My metabolic blood tests have been coming out perfect including glucose, sodium and cholesterol. Dr. Liptan has me on two supplements; one contains curcumin and one contains fish oils. She also taught me about a cream that contains magnesium and MSM for aching legs and sensitive skin. I am fortunate enough to have a husband who steps in during a flare which are becoming less frequent, a TempurPedic adjustable bed, plenty of rice bags and a step in hydrotherapy bathtub. Try bamboo sheets; they are amazingly soft. I am on FB under Susan B. Walker, Emanon Business Service if anyone wants to reach out for more information. And thank you to the creators of this site; I learn more every day!
Susan, what a fabulously encouraging post! Thank you so much for sharing 😊
Thanks Susan. We have similarities, see my post above. I take Magnesium daily along with Vitamin D (living in Northern Coastal foggy California). I am very interested in the book and will check it out.
I have these symptoms and use Baclofen and Meloxican. My worst symptom is when I am in the shower and I become dizzy, shortness of breath and I hurt in my upper back between shoulders and it goes through my chest. I believe there is something wrong with my lungs but doctors insist it is fibromyalgia or my heart. Does anyone else have this problem. I have even passed out in the shower.
Hello,
Thank you for posting. I’ve suffered for 14 years….NO MEDS. WHY? No one could diagnose me. I’m not sure if I have fibromyalgia. My pain started when I was given a pretty good dose of Levoquin…considered a BAD drug on Black Box. It started almost immediately. I knew what was causing it before my doctor did….and 4 years later, she was STILL prescribing it to patients….my son being one of them. I’ve done a lot of research on this but cant seem to find a doctor who has. I have an appointment this week. Lets see what happens. I’ve also noticed that with stress, things get worse. I cant get out of my chair at work without looking like I’m 80…I”m only 55 with a great figure…too bad I can wear heals anymore or do sports. I’m fearfull that I wont be able to exercise anymore….oh and one more thing….I go through bouts of REMISSION…..the pain just STOPS. Sometimes for weeks, sometimes for months. But once my right thumb and index finger starts to hurt….then I know I’m about to be in pain. Artificial ingredients (Lets use a chocolate cup cake for example) cause more pain for me. When I see cake….especially those fake chocolate frosting and such, my body see pain all over that. I have to eat ultra healthy . My brain fogs are nuts…which makes me feel the same way. I feel like I”m losing my mind half the time…the other half I’m trying to remember where I was at work, if I get interrupted. Thank God my bosses understand…even though I have no diagosis yet. I’ve waited several years, on purpose , to get re diagnosed ( some thought I had lupus, MS or some diagnosis I couldn’t pronounce that needs deeper testing, not just a 5 minute room exam appt.) Any advise for me?
Yvonne, have you seen a rheumatologist? Typically they are the ones who diagnosed fibromyalgia. Also, you might want to request blood work to rule out any autoimmune disorders. I wish you well as you search for answers!
Does any one need a walking stick when the are walking around the shops my legs feel like the are going to give way after awhile
The pain is getting worse
Linda, I always have a cane or rollator with me when I’m out. My legs feel the same 😕