Fibro’s Unwelcome Friends

Fibro’s Unwelcome Friends

Through the Fog

I know that I’m not alone in the fact that FMS is not the only thing I deal with. How about you? Let’s look at some of those unwelcome friends and how they impact our journey, shall we?

Irritable Bowel Syndrome, aka IBS. This can result in various symptoms: diarrhea, constipation, abdominal cramping, sweating, and nausea. The symptoms are intermittent and can be brought on by stress or certain foods. Anyway you look at it … it’s no fun!

Debilitating chronic fatigue. This is the most difficult symptom for me to deal with, and the most frustrating! I have to plan my day and activities outside the home very carefully. Even a two-hour dentist appointment will do me in for days. Thanks to this unwelcome friend, I spend most of my time in bed. Even sitting for a couple of hours will cause me to hit the proverbial wall, and I HAVE TO lie down.

Costochondritis. Initially, when I first experienced this, I thought I was having a heart attack. The cartilage that connects a rib to the breastbone becomes inflamed and causes a lot of pain. It often resolves itself in a few hours or days, but if you’ve never experienced it before, it can be really scary. If you think you might be having a heart attack, go to the ER. Better to be safe.

Muscle weakness. My thigh muscles are weak and keep me from walking longer than five minutes at a time, unless I have a shopping cart to help support me. It gets much worse if I push myself and walk too far at one time. My arm muscles are also weak. That prevents me from holding a book, carrying anything heavy, or spending too much time typing. Well-meaning people tell me that if I exercise more, it will get better. I’ve not found that to be true.

Lack of quality sleep. If I have a hard time falling asleep, I put a drop of lavender essential oil on the pulse point of my wrist and rub my wrists together. It really helps me fall asleep. According to the National Institutes of Health (ninds.nih.gov), we usually pass through five phases of sleep: stages 1, 2, 3, 4, and REM (rapid eye movement) sleep. These stages progress in a cycle from stage 1 to REM sleep, then the cycle starts over again with stage 1. We spend almost 50 percent of our total sleep time in stage 2 sleep, about 20 percent in REM sleep, and the remaining 30 percent in the other stages. Infants, by contrast, spend about half of their sleep time in REM sleep.

The NIH continues:

During stage 1, which is light sleep, we drift in and out of sleep and can be awakened easily. Our eyes move very slowly and muscle activity slows. People awakened from stage 1 sleep often remember fragmented visual images. Many also experience sudden muscle contractions called hypnic myoclonia, often preceded by a sensation of starting to fall. These sudden movements are similar to the “jump” we make when startled. When we enter stage 2 sleep, our eye movements stop and our brain waves (fluctuations of electrical activity that can be measured by electrodes) become slower, with occasional bursts of rapid waves called sleep spindles. In stage 3, extremely slow brain waves called delta waves begin to appear, interspersed with smaller, faster waves. By stage 4, the brain produces delta waves almost exclusively. It is very difficult to wake someone during stages 3 and 4, which together are called deep sleep. There is no eye movement or muscle activity. People awakened during deep sleep do not adjust immediately and often feel groggy and disoriented for several minutes after they wake up. Some children experience bedwetting, night terrors, or sleepwalking during deep sleep.

When we switch into REM sleep, our breathing becomes more rapid, irregular, and shallow, our eyes jerk rapidly in various directions, and our limb muscles become temporarily paralyzed. Our heart rate increases, our blood pressure rises, and males develop penile erections. When people awaken during REM sleep, they often describe bizarre and illogical tales — dreams.

Research suggests that people with fibromyalgia are constantly aroused by bursts of “awake” brain activity, which limits the amount of time they spend in these critical deep stages of sleep. “On EEG studies, fibromyalgia patients in deep-sleep stages have been found to have alpha waves, which are signs of arousal or wakening,” says Patrick Wood, MD, chief medical advisor for the National Fibromyalgia Association. One study found that fibromyalgia patients experience at least twice as many arousals per hour as people without the disorder.

Foggy thinking. Difficulty concentrating and remembering. Seriously, in a matter of seconds, I completely forget what I was going to do. It’s like your brain has taken a vacation to a cloudy island. Have you ever had so much on your mind that you put the milk in the cupboard and the cereal in the refrigerator? Put you ATM pin on your microwave and stand there waiting? It is normal for people to occasionally misplace their keys, struggle to pay attention during conversations, or have difficulty concentrating on paperwork. For those of us with fibromyalgia, problems with concentrating and remembering happen more frequently, and can definitely be more severe.
It helps to have a good sense of humor with fibro fog.

What are your thoughts?

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.

66 comments

  1. Julie Johnson says:

    One very simple thing I started doing years ago to help me with sleep issues was to get a sleep mask. WOW – what a difference. My favorite one to date is the Nap Plush Eye Mask from Brookstone.com: http://bit.ly/comfyeyemask I’ve tried many, but this one hands down is the most comfortable and effective all around. Low dose Ambien has also been a godsend for me, otherwise I’d never sleep. Love your articles, Robin – thanks! (BTW, you can also purchase that eye mask on Amazon.)

    • Bette J Thomsen says:

      Hope you know never, never drink alcohol when you are on Ambien. I had many adventures including smashing my face into a wall seriously injuring myself and denting the wall.
      Broke 2 ribs in a bathroom fall, and various and sundry other events. When my Dr became aware she took not only me off Ambien, but took all her patients off the drug; “too dangerous”

      • Steve says:

        I’ve been on Ambien generic for eight years for fibro insomnia, would just lie there and stare at ceiling for hours without it. Many of the meds we take don’t mix with alcohol, just need to wait until meds are out of your system to have a drink. Unfortunately, when I went on 24 hour Tramadol a few years ago I had to give up my nightly red wine with dinner. I wish that were the only loss.

  2. Viv says:

    Once again you have hit the nail on the head. Have it all. Also I’ve been wondering if anyone else finds clothing a problem. My neck and shoulders are so sore some of my shirts are impossible to wear. Everything feels like it weighs against my neck and I end up stooping trying to get away from my own shirt.

  3. Annette Fountain says:

    I definitely have all these symptoms fibro is bad stuff. I find as I have gotten older I can describe the different ailments better!

  4. StevefromMA says:

    I’m very glad you posted costochondritis as a familiar FM symptom because it’s not a diagnostic requirement for FM, no medical folks will mention it, and many FM folks will be puzzled by these awful transient pains in xiphoid (breastbone), ribs, and, for me, coccyx (tailbone). I have been distressed and puzzled for three decades how I can have so many bad and weird pains in so many places as I’m sure the rest of you have. I very recently started using a THC (MJ) salve I can get in my state on these areas, not sure yet if helpful.

      • Christina Karathanasis says:

        Isn’t it maddening! I can’t sit long either.On top of FMS I have failed back surgery, multiple spine issues, sciatica, CRPS, CFS, migraines, hypothyroidism, plantar fascitis. So I can’t sit, walk or lay down even for very long periods which means I only get 2-3hrs sleep & have to get up & walk a little, sit up. And usually I can’t go back to sleep anyways.

        All of you living with FMS,you are my Hero’s!

        • Dianne Wilber says:

          Hey , Christina ,I have tail bone pain 2 . You can read about it from my comment 2 Sharon . How have u treated your plantar fasciitis ? I`ve had it since 1985 . I`ve tried everything, even surgery ! The 1 thing that helps is wearing Orthaheel shoes . There made especially 4 plantar fasciitis .Vionic is a name they`re made under also . Let me know how you you’re doing

          • Chery Newell says:

            I have tailbone pain periodically, but nothing to the extent that many of you have mentioned. My regular pain meds take care of it for the most part. I am glad the ice works for you. I wish I had another suggestion for you, but I don’t. Take care. Soft

          • Bette J Thomsen says:

            I found all the shoes I need (for planter fasciitis) in the Foot Smart Catalogue. CURED All symptoms of pride in just a few Months. No more ever.

          • Bette J Thomsen says:

            Of course I meant cured my PF, not my Pride!????I suffered PF for years until I discovered Spencer’s flip flops and slides and Ortho Heel products.????

        • David Brock says:

          I have FMS, Syringomyelia and severe arthritis in my hips and knees. I can’t sit too long but I can’t stand too long either. I get very stiff and painful, my lower back hurts, my neck and shoulders hurt (besides my hips and knees akways hurting) and my feet and ankles hurt too. Walking gets harder, especially steps and slopes and cold weather makes it worse to. I’ve had thyroid issues and NAFLD (non alcoholic fsttly liver disease) even though I’m hardly overweight. As hard as it gets I keep fighting back, we all do. I have several times searched for reasons to keep fighting but I have an 8 year old son so that’s not hard.
          But still, coming here and seeing so many people who suffer with FMS too and who understand our problems, it does help.
          One of my mantras these last few years has been “there’s plenty worse off than me” which is true.
          I see people with cancer who’ve not long to live, service personnel who’ve lost 3 limbs, their sight and seen comrades tortured and killed.
          For everything that’s wrong with me, I am still lucky.
          Chin up Christina, keep fighting.

    • Hi Steve, I`ve had pain around my tail bone since 1984 ! I have Fibro . The only thing that`s helped is to sit on ice. I can`t sit w/o it . I take a cooler w/ me every where + sit on ice sheets .Tell me about the salve you use + if it`s working .Thanks ,Dianne my e-mail is , coolnana7@cox.net

      • StevefromMA says:

        Thanks for your response. Sorry I don’t have any good news to report for me about two different salves, one a THC salve in my MMJ state I’ve tried on several FM pain areas with no success. The second, an expensive ($100) ketamine salve with a lot of powerful meds (ketamine, Baclofen, bupivacaine, etc.) I got specially compounded with a pain management guy’s prescription has apparently helped some fibies but gave me scary breathing problems after 20 minutes, not sure which med caused it. Add it to my closet of expensive meds and supplements that didn’t help. Anyone with better salves let us know, I really need one. Oh, also compounded my own salve with MSM, also useless.

        • Denise Bault says:

          I’ve used a couple of topical creams that do seem to give at least me some relief. One is Voltaren Gel. The other is a compounded cream that is made up of Ketoprofen 5%, Lidocaine 5% and Cyclobenzaprine %5. Both are prescription meds. May help you too…good luck!

          • Lynda Peterson says:

            For a topical ointment, I use Arnica. Arnica gel is available at Walgreens or you can get it in an oil and put it in a lotion or apply directly on the skin. This has worked for me when nothing else has! It’s from the Montana Arnica plant. It’s a natural anti-inflammatory.

        • Dianne Wilber says:

          Thanks for responding Steve. Sorry you haven`t had any luck w/ all those salves .One that has helped me lately is Topricin. It works on my shoulders + arms but not on the tailbone .It`s OTC at CVS + Sprouts .Costs $15- $22 ,depending on size .Hang in there ,OK

  5. Denise says:

    I’m glad you explained the sleep conundrum. People think that just because we spend 8 hours in bed “asleep,” that we should wake up refreshed. It’s just not so! I’ve had 2 sleep studies done that in fact showed my brain was constantly “waking me up” 10-15 times per hour! These were not conscious awakenings, although I have those too. Along with the chronic fatigue, IBS, fibro fog and all the other fun symptoms that go along with this bizarre, invisible illness, it’s surprising that we can have a sense of humor at all. It certainly helps to know we are not alone. When I meet new people, I always joke that there will be a short term and long term test later about our names…gets a laugh if nothing else! I appreciate your site. Thanks and keep up the good work!

    • Rose says:

      I was diagnosed with Fibro over 15 years ago, but when I think back, I was having symptoms way before that. I have sleep apnea, and when I had my first sleep study (late 2009), they hooked the electrodes to my head to keep track of my sleep cycles. All of them were reversed, meaning the long cycles were too short and the short cycles were too long. There is no way to correct this that I know, and even when wearing my bipap and getting 6-7 hours of sleep, I am still tired from the fibro-I do not get any restorative sleep. The fatigue has been the worst problem for me, and I find now that I’m older, the muscle weakness in my legs is worse. Thank you so much for this article!!

        • StevefromMA says:

          Me, too, often it is awful burning/freezing pain inside and/or out but sometimes when I get up, it is like science fiction, my legs are so weak and heavy that it feels like someone increased gravity just for my legs. Bizarre. I assume that our muscles were tightly contracted all night and just exhausted by AM. Sometimes spasms during night that’s why I assume that.

  6. PAMELA BERGMANN-KNEBEL says:

    I have nearly all of the above, but the information on sleeping is interesting and I have tried to explain it to my friends and family but am going to print this so I fully understand and maybe give it to my doctors also. Good, good article

      • PAMELA BERGMANN-KNEBEL says:

        Robin: do you have any articles on the use of pain meds in relieving fibro pain. I know this is a taboo topic with many docs and I am trying to educate my new one (I go to a practice that trains residents and recently got a new one, the one that left totally got it.) I only take PRN but some pain docs and rheumatologists do prescribe for my friends with fibro. Wondering what your thoughts are. My doc said to to try massage and yoga and I thought, I’m at level 8 1/2 and I’m going to have a massage or do yoga when I can’t even get out of bed, are you out of your mind. Appreciate any help on this topic.

        • Robin Dix says:

          Pamela, have you thought of going to a pain clinic? Rheumatologists specialize in illnesses such as fibromyalgia. I would find a good one, look up ones listed in your state or health plan. No one should have to suffer ????

          • PAMELA BERGMANN-KNEBEL says:

            Robin: yes; two of my friends have referred me to both kind of docs; I just need to make an appointment with the rheumatologist which my one friend swears by. She says she has no pain. On only tramadol 4 x day. The pain doc I saw would not give pain pills. I WILL make the call tommorrow. My reg doc would probably give me pain pills on PRN its just she says she needs to ‘get to know me better’ and then when she leaves I will start all over. Thanks for the advice. You have just given me the boost I need. I LOVE your articles.

        • Karen L Force says:

          Pamela; I have had fibro for 50+ years. I have been on narcotics and have used every supplement imaginable for the pain. I live in Oregon and am currently taking RSO (Ricky Simmons Oil) capsules. RSO is used to treat cancer patient pain and I find it has helped me immensely. I take one capsule an hour or so before bed along with the Gabapentin and 3 mg. of Melatonin. I sleep better than I ever have (though not “normal”) and I don’t hurt as much as I used to. You might want to look into it.

  7. Pat Gibson says:

    Thank you, thank you, thank you, I feel as if I’m going mad! Your article has saved me from really desperate measure. I’ve had FM for many years and gradually all the other symptoms have added themselves but these last couple of weeks the chronic debilitating fatigue has been constant with the pain in too many places to mention, I also have h.pylori which is awful, some days I’m ashamed to say I can’t wash or do my hair. I’ve had to cancel important hospital appointments and miss family gatherings. I’ve really felt so alone especially as majority of these symptoms don’t show themselves – so add to all the above being a burden, if we had bandages or plaster casts others would understand.
    I’m so glad I read your article today Robin Dix I can’t thank you enough, I look forward to your posts your great

  8. David says:

    I was diagnosed with FM over 5 years ago. Since then I’ve been told I have severe arthritis in all my major joints and need a new hip now, , probably new knees in a few years.
    Then last month I was told I have Syringomyelia too! SO thats 3 hidden illnesses any one of which could have a major impact on my life.
    It’s often hard to get started in the mornings but reading comments on here helps. Just knowing there are people who understand, which so many of my immediate family family don’t seem to do!
    I have a structured day, if I deviate from my routine everything turns to crap and even my two lots of strong strong painkillers (tramadol and gabapentin) don’t alleviate the pain.
    Thank god for good good friends and blogs like this that bring so many FM sufferers together.
    Now I’m off to your FB page too…….
    PS, three things have kept me going thru the worst days, my wonderful wife, our 8 year old son and our beloved dog, without our dog I probably wouldn’t get the small amounts amounts of exercise that stop me seizing up completely. When I suffered from depression I’m sure it was the dog nagging me to go out that helped me beat it, actually he (Albie) probably saved my life.

    • Denise Bault says:

      David, I am so sorry for your pain. I too know what it is like to have family and friends just not “get it.” (It’s almost as bad as the illness.) I would recommend stretching in bed before you get up. Take 10 minutes and “awaken” your body. There are lots of gentle exercises you can do that will help. I do them in bed! I would also suggest you discuss with your docs about your pain meds. There are other ones you can try. I was on Nucynta for over 3 years and have now gone to Oxycodone – the “terrible” drug that everyone is afraid of. Not only has it made me NOT want to kill myself, I can actually achieve some things each day. Regardless, try not to over do it. Then you’ll pay for it the next day or two. I too have animals that have basically saved my life, as I was unable to have kids and my husband “just stopped caring about me once I started getting sick.” (His words, not mine.) I divorced him and I lost about 210 pounds of stress! The best thing is that you are not alone! I don’t know you, but I care! Remember, be good to yourself…

      • David Brock says:

        Hi Denise, I usually take ten minutes to get up. I just can’t do it straight away! I haven’t tried stretching but I will now, thank you. I’m not sire where you are but I’m in tbe UK, Wales actually, Swansea. Are those the meds british names?
        I too have found that meds can work fine for a while then just stop helping, it’s a constant battle but fortunately my doctor is pretty good.
        I can’t believe your husband did that to you, he sounds like a real selfish b’stard!!
        Remember, you’re not alone either, us fibro sufferers have to stick together. Good luck mate.

        • Denise Bault says:

          Hi David! I’m in the U.S., so the meds may or may not be the same in the UK. Thank goodness you have an understanding doctor. Here in Florida, they have really cracked down on opioids as they had a lot of “pill mills” where people were coming from even other states to get strong pain meds. The Drug Enforcement Agency is cracking down even further from what I’ve been reading lately. My pain management doctor said he could ONLY prescribe Cymbalta, Savella and Lyrica for fibro. (Tried them. Didn’t work for me. Gained 40 pounds on Cymbalta and felt like a zombie. Got off it and got rid of the weight.) I’ve also got degenerative disc disease and some buldging discs which is how he was able to give me something stronger for the pain. I also took in 8 articles I pulled off the internet that shows opioids do work in helping fibro sufferers. ( Along with one that showed studies that the three he can prescribe only help about 8% of those afflicted.) He’s young enough and smart enough to want to read them, but his hands are tied by the DEA. Correct me if I’m wrong, but there is absolutely NO reason for any one in any civilized country to have to be in constant pain! One of the things that helps me the most is swimming. A real life saver if you can find a heated pool. The stretching in bed will help – if you remember to do it. I’ve practiced yoga off and on and it helps too. Some gentle poses in bed help me get up. So, good luck to you, my new fibro friend from across the pond! Denise

  9. Tori says:

    The biggest problem for me (outside of the reality of Fibromyalgia) is finding a doctor in Finland who 1. speaks English and 2. believes Fibromyalgia is a real diagnosis. The only doctor I’ve found in the town I live in says “Fibromyalgia is a diagnosis for lazy doctors” and will not even consider that it’s a real illness.

  10. Cheryl Newell says:

    I was diagnosed with FMS in 1998. I was working full time as an RN. After several months of being on only Naproxen (Aleve) for pain, I finally sat down on our dining room floor one night as I came in from work, and just sobbed that I could not do it anymore. I have a WONDERFUL husband. He said “then don’t” and increased his own work schedule (he was a contractor) to adjust for our budget without my salary. It took me YEARS to finally get a regimen that works for me. I am now on Gabapentin 600 mg three times a day; Nucynta ER two times a day; Hydrocodone (Vicodin) 5-325 mg one or two pills for breakthrough pain prn (for my degenerative lumbar spine); Cymbalta 60 mg (an anti-depressant that also blocks pain perception); Carisoprodol 350 mg (Soma-muscle relaxant) at bedtime;Compound lotion for pain – Lidocaine/Prilocaine/Lamotrigine/Meloxicam – One to two pumps (1-2 Gm) 3-4 times daily for pain (max 8 pumps per day);Xanax 0.50 prn anxiety/panic attacks;Clonazepam 2 mg @ bedtime for insomnia. Boil half a banana and keep the water, add some cinnamon, and drink before bedtime. It helps me fall asleep faster. I have been on every sleeping pill on the market and each of them only worked a few months each. The clonazepam has worked for 6 years so far. I’m sharing this information because, as I said, it took me YEARS and MULTIPLE DOCTORS to finally get on this regimen. It works very well for me for pain and sleep. I have not found anything that works for the debilitating fatigue. Some days are better than others. I have learned to pace myself. On my very good days, I no longer over do, so I don’t pay for it the next few days or longer. Sometimes, for a special occasion, such as going to an event for a grandchild, if a lot of walking is involved, I wear a TENS unit for my lower back and take the extra pain medication in advance. I also use a cane to help me with balance. But I will suffer for a few days or more after that kind of outing. The last event recently was very hard on me. Two hours of walking, even with the extra pain med and TENS unit, left me in a lot of pain and several days to recover. I have also used a wheelchair with my husband pushing it. We are looking into a motorized wheelchair now for events like this. I am VERY lucky to have a husband who totally understands my situation and helps me any way he can. He does the chores in the house, although we hope to get a cleaning lady again soon. He also cooks all meals. He remembers when I am supposed to take my meds, which I remember too, but as a backup, he is great. He never hesitates to put the compound lotion on my back when I need it. He has even told me to wake him up if I need the lotion or something else. I am truly blessed to have this loving man in my life. My sisters also understand, as one of them also has fibromyalgia. So our other two sisters see what we go through and are very supportive. Our youngest daughter also has it and her husband is just as loving and supportive as mine. Thank God. If any of this information helps even one person, I am truly glad.

    • Rose says:

      Cheryl: I was a nurse also. My fibro was manageable throughout most of my career, I worked full time for 42 years, and my last year was part time-only 1 day per week. I like you, sat down one day and told my husband I couldn’t work anymore. He was okay with my decision. My fatigue was getting the best of me, and some of the fibro fog. As a cath lab nurse for many years, I could no longer handle the 18 hour days with call, and come back into work the next morning! So I fully retired at age 63. My husband also does lots of the work around the home. And we are both amateur astronomers, and the last several years, he has been doing all the lifting, moving, etc. of our equipment during events. Your case of fibro sounds so much more severe than mine, and I’m glad you have such good family support, & a doctor who understands. Thank you for sharing!

      • Denise Bault says:

        Here’s a thought! My gastroenterologist believes that fibromyalgia is caused by some sort of virus. He interned at John Hopkins and is also a teaching physician. I asked him what he thought might cause fibromyalgia. He thinks it’s viral. He believes it’s sort of like how chicken pox lies dormant and can then turn into shingles. I see many nurses on this site with this illness. My mother was a nurse. Perhaps she brought something home and it lay dormant in me until it was triggered? Maybe for you too? Makes you wonder…and is food for thought, as unpalatable as it is!

  11. Lynda says:

    The jerky legs and weakness in my legs and arms are new symptoms for me. I didn’t know they could be fibromyalgia related. I have areas on my skin that feel like its on fire. Specifically, one of the top of my foot that is something I’ve not experienced before. Could this also be related?

    • Robin Dix says:

      Lynda, it sounds like it could be restless leg syndrome, and yes it could be related to the Fibro. My right forearm has felt like it’s burning under the skin for years now

  12. Kristin says:

    I am extremely grateful to have been directed to you by a post on Facebook about an experimental marijuana patch for the pain. I’m on chemotherapy until mid-February for colon cancer in addition to having had fibro for decades. Most days lately I sit and cry. I know things will be better after chemo, but it’s not easy to think rationally these days. I’m so grateful to have found you just now at 1:00 in the morning, up with nausea.

    • Chery Newell says:

      Kristin, I had stage four non-Hodgkins Lymphoma diagnosed in 1999. I went through chemo as well as an experimental treatment afterward. I have been in remission ever since. I understand how frustrated and depressed you are feeling. One of my fibromyalgia meds is Cymbalta, an anti-depressant that blocks pain perception. I was on Celexa in the past. If you aren’t on an anti-depressant for your FM, I would suggest that you talk to your doctor about taking one. Cymbalta is still name brand only and Celexa can be purchased as a generic now. So depending on your insurance, you might need the generic over the name brand. It sounds like you are very depressed right now, and you certainly have reason to be. I’ve been there. The pain and fatigue of the FM on top of chemo and all the baggage that a cancer diagnosis lays on you, contributes to depression. Hope you don’t mind my interfering. I just related so much to your post that I really felt the need to reach out to you.

  13. Tina says:

    As I read the comments, I feel like I’m in a room with friends with a lot to talk about.
    I have the same story as many others, many doctors, made me feel worse, feel bad about myself, like I was crazy.
    I fractured my neck at C3 3 years ago, it wrecked my body like a totaled car in a crash!
    I’ve had all the symptoms, pain, sleeping for hours, pain so bad it shook me out of deep sleep screaming.
    I FINALLY found my Doctors that don’t question ANY of my complaints, pains, concerns, questions. I found a unique pain group, I have a medicine doctor, injection doctor (anesthesiologist),occupational therapist,podiatrist, pain physiologist, and nurses that start my IVs for sedation, and for infusions.
    I have had injections in my back,wrists, knees, femoral nerves, and tail bone. The tailbone pain was horrible, and one injection fixed it. I’ve had magnesium infusion, lidocaine infusion, and next week I’m moving to propofol infusion.
    If something works, it’s great, if not we try something else. I use Butrans patch for pain, Norco for break through, baclofen, seroquel for sleep,benztropine for twitching.
    I’m not healed by any means, and it is tough to make the 50 mile trip nearly every week. Twice a month sedated for injections. I have a wonderful husband, he takes me on his only days off, and my daughter misses work to take me.
    I’m sure many others, like myself, was the one who did everything for the family. Worked full-time, cared for my kids/grandkids, powerlifted and was a personal trainer 4 days a week. Now, I am settled in my recliner, quiet, canceling things I thought I could make it to. I keep 3 grandkids every weekend, we color, read, play, I french braid the girls hair, they won’t leave if I don’t. But, Sunday afternoon I run out of gas, it’s time for them to go home. But, I’m still sad, I have 12 grandkids, I have spent less than 5 days with my 2 youngest ones, a year old. So sad, I would have had them all the time, IF, IF, I WAS ME, as I used to be. But, I’m me, as I am, and I’m alive.

  14. Sharon says:

    This is my first time here. I had chostocondritis and tail bone area pain and I haven’t heard those mentioned as being associated with fibromyalgia before. It’s been 10 long years for me. Working, taking care of a home, inside and out, and a child by myself. But I’m finally retiring! My home is sold and I have a whole lot less on my plate. My newest doc took Soma (Carisperdol) away last year and two things happened: 1) I stopped sleeeping, bad 2) was finally diagnosed with sleep apnea, good. Seems the Soma wasn’t allowing my brain to “notice” me not breathing. It was horrible until I got the cpap machine and then Trazadone to sleep at night. I take Tramadol ER, Alleve, Tylenol for pain. I do feel better when I move more so not sitting in an office all day under fluorescent lights will help sooo much. I’ve been working with a Myofacial Release therapist who has helped me immensely to increase range of motion and relieve pain. I’ve tried others with no luck. She was trained by John Barnes. Find one of his instructors. One other thing I can recommend is Digest Results, a digestive aid I get at CVS drug stores. My system has been sluggish ever since my car accident, especially meat. I ended up with a partial obstruction and diverticulitis. I’m also allergic to wheat and have some issues with milk. These pills taken 1-3 times a day with meals ended my reflux and constipation. I also take Align intermittently. Lastly, I used to get migraines triggered from allergies & muscles spasms in my back and neck. I take a half Zyrtec daily along with my myofacial therapy and I haven’t had migraines in quite awhile. I use a large variety of self help tools to keep my muscles soft. If we could only get a daily massage, right? Our health club has a hydro massage table that I can tolerate on low. And the oxygen bar with aromatherapy is awesome. I like the ones for energy and relaxation. I was a go go go person before. I put everything and everyone ahead of me. I achieved everything I set out to do. But fibro has given me permission to put myself first. I try to do things now that make me happy and feel well. That’s important. I use a low voltage heated mattress pad, mostly because I cannot feel the wires. I have a very high sensitivity to things that touch me. I develop trigger points in areas where something runs (undergarments). So I wear seamless or flat seamed clothing and alternate items daily. Otherwise, I end up with trigger points. The list is of issues is so long for us. Western medicine has failed us thus far. I’m hopeful we will get the attention we deserve. So until there’s a cure, if anything I mentioned here helps just one of you, then it was worth it. Personally, I’m down with the Cannibis patch! I hope that is approved in New York soon. Peace and god bless to all of you. PS: holidays are coming, just buy gift cards! And if you must bake, do a cookie swap.

      • Dianne Wilber says:

        Hi Sharon Besides me , you’re the 2nd person ,on this website , 2 have tail bone pain . I`ve had it since 1984 + was diagnosed w/ Fibro in 1989 . My chiropractor suggested I sit on a small ice sheet 4 tail bone pain, that 1 of her vendors sold . It`s the only thing I`ve tried that works . I take Norco + Ibuprofen + Soma ,( 4 muscle spasms ), Paxil 4 clinical depression . None of these help w/ my tail bone pain . I was told that the nerves around my tail bone r affected by Fibro + that`s why it hurts . The ice ,of course , numbs the pain . take a cooler w/ me + switch out the ice when it melts . God bless u + provide what u need .

  15. Valerie Cameron says:

    It’s interesting and helpful to read these posts. I have lived with FMS for 15 years. It was worst at the beginning and due to fibro fog my job became mission impossible. At the time I was teaching in a college in the UK. I was the first person in the building, switching on the photocopier to step slowly through what I had to copy. I would go up to the classroom and lay out my pens, handouts etc. But somehow when I started, I could never find a board pen. I would teach for one hour, then show a video and dismiss the class anything up to an hour early. Then I would sit in the classroom, try to recover and avoid being rumbled. Climbing the stairs was a major trial. I also had to arrive early because of difficulty driving in dark morning rush hour traffic. Several jobs later, I gave up and moved to Egypt where the cost of living is cheap enough so I don’t need to work. I am living off my house sale in the UK. I can swim in the sea here for 9 months of the year. I also have 6 cats, and a BF who does everything in the house. I have tried socialising but it is far too exhausting. Before I had this, I was very fit and competed in middle-distance running, working all over the world on short-term contracts. The illness has made much more patient and accepting, almost fatalistic.

    • Tim Bossie says:

      Thank you for the great comment Valerie! Your words, I am sure, will be able to help many who come to our page for information on how to deal with their illness. It takes a lot of patience, trial, and good people to help us. We hope that you continue to enjoy swimming in the ocean for a long time to come. 🙂

  16. Anne says:

    I wonder if doctors who order a sleep study often read the results and think the FM patient has sleep apnea and says you need a cpap machine at night. Can a sleep study differentiate between FM arousal and sleep apnea?
    I started sleepwalking again a short while before I was diagnosed with fibromyalgia at the age of 55. If I don’t pace my activity and do too much for a few days I often sleepwalk. ALSO twice I have been prescribed antidepressants to help me sleep which caused much more severe sleepwalking, one time I caused a kitchen fire… the other time I fell down hard six times and after each time I told myself I was sleepwalking and told myself to go back to bed, but was still sleepwalking and didn’t know it till I fell again, and on it went. Before FM I hadn’t sleepwalker for 39 years. I don’t know if a cpap machine will actually help me.

    • Robin Dix says:

      Anne, interesting question. I did have a sleep study done when I first had Fibro. Although it showed some awake moments, I did not have sleep apnea. I can’t imagine how scary your sleep walking episodes were. Doctors can prescribe meds for us, but we really need to advocate for ourselves and be clear with our dr about what works and what causes bad side effects. That way they can be sure it gets put in our medical file.

    • Denise Bault says:

      I had two sleep studies done, about 5 or so years apart. There are different kinds of sleep apnea. Most people know of the “obstructive” kind. I believe we have RERA’S or “Respiratory Effort Related Arousals.” That’s where your brain wakes you up without your knowing, although you can have conscious awakenings as well. (My studies showed I was waking up 10-15 times an hour and didn’t know it.) I went through 2 expensive CPAP machines and finally stopped using them as I did not feel I was getting ANY restorative sleep. Could have just been the fibromyalgia, I don’t know. A CPAP might work for those who are having obstuctive apnea. I went as far as to have surgery on my nose and throat (they cut out part of my uvula) to try and fix the apnea. Found out I had a deviated septum in my nose which was fixed. I could finally breath better, but I don’t think it really helped with the sleep problem.

      • Rose M. says:

        I’ve had 2 sleep studies in the last 6.5 years. I’ve been on Bipap since my first study. I often do not get restorative sleep. My apnea is mostly central, meaning my brain just forgets to tell me to breath. Also they found that my short stages of sleep are too long, and my longer stages of sleep are too short. I believe that the neuro component of Fibro is connected to this. Whenever a doc shows no concern related to my Fibro, I point this out & say ‘So my brainwaves are lying?’ I’m afraid not to use my Bipap because I’m afraid of the long term cardiac effects.

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