Being in so much pain usually means that it’s difficult to get to sleep at night and that sleep is disturbed due to the pain. Because of this, fibromyalgia patients often experience extreme exhaustion and fatigue.
Read our columnist, Robin Dix’s take on the things that blindsided her when she became ill.
I have suffered from most of those symptoms. I hadn’t had many balance issues until recently but now I get sudden dizziness that only lasts a few seconds. I get excess sweating at the tops of my legs and (no jokes please) in my butt crack. I’ve woken in the night thinking I’ve wet myself.
The worse thing for me is waking in the morning, even after sleeping all night which is rare, and feeling more tired than when I went to bed. It’s usually accompanied by a lot of stiffness and nausea.
I expect we’ve all experienced that grotty feeling that is all encompassing and makes any movement hard work, and then feeling fine one moment but then so totally tired you’ve gone to sleep in seconds.
I hate it when I can’t think of the right word or can’t remember a friends name. The mood swings are thankfully not so severe. I rarely feel so down that it’s depression though I can swing from happy to angry quite quickly for no apparent reason.
The depression can be quite severe at times. We at Fibro News hope that you are able to stay strong during these times.
Are you receiving B12 injections and have you had the B12 level analysed. I’m also on 10 000 units of D3 a day. I know some on 20 000. Look at the UK Pernicious Anaemia site as there is a list there of the symptoms of B12 dificiency, and, if you have time/energy take a look at a Prof. Holik from the Boston University. He has a number of lectures on Youtube which are quite entertaining. I know what depression is like and know that I’ve been helped by all this so this may help someone else.
Brock from Somerville, MA?
What does so Fibro patients do for the pain that burns so bad that Lyrica doesn’t even touch? I can’t even sit at a restaurant table and relax to eat my dinner with my family or icing the sugar cookies etc.. without severe burning pain that is horrible, I’m sure like everyone else’s!! Please help with any answers so I can take ideas to help me to my Doctor/RA Doc! Thanks for reading!
Hi Sandra, I have found that my diet was extremely important. Two things that created a lot of pain, depression and brain fog for me were dairy and soy milk. I became suicidal with the increasing reaction to dairy and it took me ages to work it out. Cannot do any dairy including lactose free. I still have a lot of food restrictions. Also when I was at my worst I had to drop histamine foods. I can eat some now but I think I still blow out every so often. Something in me told me to stay away from drugs, although eating Cannabis before bed is helpful for sleep and relaxing muscles. Now I see that there are Cannabis patches. Not sure if they are on the market in the US. We are very slow here in Australia in the medical circles so it might take awhile to get here.
Hi Tess, I’m also in Australia, Qld, with Fibro. Would you like to get in touch?
I’m so glad to hear that someone has the burning pain when sitting,I have been attending physio for years as they try and get me some relief but nothing works,even lying in bed all around my buttocks burns, I do take lyrica but tthat doesn’t even work for me..so depressing.
The only way I could relieve the burn, is to use Harlequin Oil. This oil is from a special Marijuana plant. This oil keeps the burn away and helps with both types of Arthritis. It does not get you high, infact it has been nicknamed the Hippies disappointment. I rarely need an opiate to relieve pain. It is a wonderful alternative,you have more energy because it is high CBD level, overpowers THC which has been known to make you tired,or paranoid. Gods medicine.
Due to having chronic kidney disease I cannot use Lyrica. The Cannabis Patches would be amazing. My son has severe nerve damage to his leg from the knee down and he is on heavy doses of Lyrica which don’t even take the edge off the pain. How soon will the Cannabis Patches be available in Australia?
Just hearing others experience is so helpful. I have 9 out of 11 of these symptoms, have been through testing to rule out other things, and am still told that I may or may not have FM. Tearfully grateful to know I’m not crazy and hopeful that I may find some relief in cbd oil. I have tried adjusting food, using exercise (which contrary to dr’s advice only makes it worse), vitamins, “natural” and wholistic remedies… I look forward to finding healing or pain relief, or both.
Leta – Basically the doctors don’t really know who has and who doesn’t have Fibromyalgia. There isn’t one definitive test at this time. I recommend checking out “Pinterest.com” if you haven’t. I discovered it last week and found that a lot of Fibro sufferers have some good suggestions. I have 9 of 10 symptoms listed above, so it could be worse, right? I wish you well.
Thank you for this list. I can tick all the boxes and have had trouble here in the UK to get anyone to take me seriously. I’ve mentioned research being done in the US to consultants and they just tell me it’s not done here. They don’t know about the grey mass of the brain deteriorating or the use of LDN. I am blessed to go to an MS Centre where they use hyperbolic oxygen treatment and it has kept me walking and sane. My doctor now listens to things I’ve discovered, including the damage done by low B12 and D3 levels, and has allowed me to have B12 injections (which should be offered automatically to people with neurological illness). This has eased the problems with imbalance and needing the loo on a frequent basis. Amytriptilene at 50 mg per day helps with both the pain and the mood but I have to take very high amounts of pain killers and anti-inflammatories to get through. Codeine and paracetamol on bad days/nights, especially to deal with the costochondritis. I hope my sharing has helped someone out there. I also have ME and cerebella atrophy.
Thank you for sharing Alexandra. It not only takes a great amount of courage to endure through the day, but to also share it with this community.
My body aches all over to the point that I feel I am going to die . My neck shoulders and now my feet hurt . Irritable bowl is also a huge problem .. I take Pregablin , Fluroxatyne . D3 .
61 years old
We are truly sorry to hear of your struggle and pain. Does the medication help any?
I frequently hear positive things about Lyrica-not from this fibro woman. Mercy me!!!
Meds and I do not get along at all. Allergic reactions to the max.
Pain is not to be scoffed at, but the side effects were beastly. Just me I suppose.
I once had a full life. Now SS has changed things. Did not know that when the former husband dies that if neither remarried-I am his widow!! No choice. Kicked me out of state funds and has me scrambling trying to know what to do for secondary. One hospital visit could leave me in debt-have not been there for long time-whew! Was there the last time in ER for renal failure because the family doctor prescribed the wrong dosage of a medication. I thought it was my heart.
This change also means no more visits to the pain specialist for trigger point injections as I cannot afford the co-pay. Turning 65 has been a nightmare.
After reading all of the symptoms-surely my photo ought to be here somewhere.
I have all 11of these symptoms.
I have had Fibro for so many years that I don’t ever remember not having it.
Bedsides Fibro I have other conditions that cause severe pain.
I don’t take any pain meds except Tylenol on a daily basis. I have no clue what my liver is doing by taking it every day.
Lyrica did nothing for me and medical Marijuana didn’t even effect me so I don’t use it.
I exist in never ending world of pain.
I don’t have any hope of not ever being without pain.
Hi Chelly. I just read your words. Pain is not for wimps-the meds used for fibro did nothing except muck w/ my head and the side effects were horrific. I too have other conditions. I have found that living in a world of pain can be a lonely place. I have found others here who experience the same thing.
Thank you for your comment and I can hear your pain and frustration. I have used the term “fantasy bucket list” in other comments. The feelings of rejection from others that do not understand saddens me. the way I try to look at all of this is that they do not understand and it is their ignorance.
Their is other good info and support here. 🙁 🙂
Hi everyone, I don’t know if this will help but after doing a lot of research I have found several things that have helped and here they are:
To help fog a neck brace to keep your blood flow to your brain at night level seems to help. Takes a few days to take effect but certainly seems to be a lot better than before.
A hand held sonic device for giving pain relief helps on arms, neck and shoulders.
It is likely that your serotonin levels are low so taking walnuts,almonds, cheese, pineapple and high levels of dark chocolate (above 85%) for breakfast not only helps digestion but increases your seratonin levels in the brain. Give them these things a try. Hope it helps.
I have had fibromyalgia for more than a decade, probably 2. It took along time for the diagnosis. I have all 11 symptoms, plus Meniere’s disease (ears), low thyroid, diabetes, colitis, and other stuff my body has been hit with. Lyrica only works some of the time, and I try not to take anything stronger than Tylenol. Allergic to morphine and Demerol, and can’t take NSAIDS. But, I refuse to give in to it. I need to enjoy my life. When the pain and exhaustion are too much I stay home. I am looking into CBD for the pain. I hope it helps. Hang in there.