Is it fibromyalgia?
Posted , 3 users are following.
Hi,
I have been struggling with what I have for more than 6 years now, I have seen countless numbers of doctors who failed to diagnose my condition (Sleep specialists, Neurologists, Rheumatologists...etc).
I experience immense amounts of muscle pain, sleep deprivation, depleted energy, poor concentration and memory, appetite loss and minor stomach contractions.
I would be fine for few days then without warning it would hit me in the morning when I wake up. I feel complete devastation and the pain along with all other symptoms would keep increasing until I sleep again for really long hours (The severity of the pain varies, sometimes it gets localized in my cheeks, inner thighs and lower back while other it is so intense and all over my body and only go away with prescribed pain killers). The symptoms can last days If I don't break the cycle by sleeping well.
I have been on seizure meds as my neurologist thought that i might have "tonic/stiff sleep seizures" but all the Video-EEGs came back negative along with the MRI and seizures do not explain the pain. In his notes he wrote that I might have fibromyalgia.
However, my pain is constant...It does not increase when I press (I don't have tender or trigger points). I also don't experience any muscle twitches or weakness.
Could anyone relate please?
-Thank you!
0 likes, 4 replies
Magpie2me nancy.ali
Posted
Hi Nancy. Yes you certainly sound like you have the symptoms of FM. We can also suffer from Chronic Fatigue which goes along with this condition. You could ask your doctor to refer you to a Rheumatologist and he will be able to diagnose it correctly. If you do have FM Nancy, don't despair. There are millions of us out there and you can still lead a somewhat normal life. You will learn methods that work for you to manage this condition. Learning your own limitations and respecting them is a key. Plus lowering your stress since that makes our symptoms worse. Poor sweetie. I know you feel desperate at the moment but you will get answers. I am almost positive you do have Fibromyalgia. So take heart. It is not fatal and you will learn to live with it. Eat as healthy as possible because you will need all the vits and minerals you can ingest. Limit caffeine and sugar and junk food as much as possible as well. People are here for you sweetie and all of them can give you the support and input you will need to cope. Warm gentle hugs! Maggie xx
nancy.ali Magpie2me
Posted
Thank you so much Maggie. I appreciate your encourging words and the tips. I try to remain postivie and I know that my loved ones are trying to help me they just don't know how. I don't have traumatic events in my life but I used to get stressed easily.
Though I can't find a doctor who specializes in treating FM I was lucky enough to find a neurologist who is sympathetic and is willing to help with as much as he can.
I know that sleep hygiene and pace are the two most important factors to manage the FM. I have been trying to controll both for a long time without success. How do you control your pace in the good days? It is so hard to control myself when I feel that good after the horrible episodes. I have also been a night owl all my life and I keep failing to be on regular sleep schedule because once an episode hits it throws my sleep out of the window because I would need to sleep A LOT to recover, how do you manage this??
Thank you Maggie and please execuse my English as it is not my first language.
bronwyn97278 nancy.ali
Posted
Hi Nancy; I note that you have seen a 'rhuematologist and say you found he/she very sympathetic, but not sure re a diagnosis of Fibro. I, too, feel that your symptoms are not consistent with what I, and others, have described. The mention of Sleep Seizure maybe something to ask for more investigations into??? Did the Neurologist suggest you be admitted to a Sleep Clinic to be observed over a few nights' sleep and your patterns of Brain Activity while sleeping? This would be one way of Proving or dis-proving this track of treatment.
?Perhaps others may come on here, and give you more of their experiences with these symptoms. It is different to mine and others, when you say, the pain persists, until you break the "cycle by sleeping well". Does this mean that you go for many days without sleep, and then you can "go to sleep and the pain eases"? This is how I am interpreting what you say. In most cases, sleep is "just not possible for Fibro sufferers," as it has been found that we don't manufacture enough of the hormone Melatonin naturally, and I have found that I have resolved this issue ( most nights anyway), but supplementing with Melatonin Tabs from OTC at pharmacies/on-line. My pain can of course "wake me up" if too bad, especially in the heat, and my muscles seem to be affected more; however, this is controlled completely differently (usually with Amitriptylline).
?Please keep us informed of how your symptoms develope, and I DO hope you find a diagnosis that is treatable (and preferably not Fibro, but something a lot easier to deal with). Bron
nancy.ali bronwyn97278
Posted
Hi Bron! That's exactly the insight that I am looking for!! The information everyware doesn't not tell those minor details and to be honest with you after 6 years what I have found is the doctors are clueless and I decided to take control of my life and guide them if necessary especially with such unique condition.
My nurologist is the one who is sympathetic and without the pain killers I don't know if I could have been able to continue living. The pain is so insane that sometimes I wanted to cut my leg or cheek (sometimes it gets localized in my cheek, lower back and inner thighs while others it is all over my body). He is also the one who suspected fibromyalgia but the reutmatoloigst I saw did some immunity blood tests and they came negative and she gave up (as most of the doctors did in my case).
I did an MRI, deep blood tests, Lupus, TSH test, ANA tests, Parasite test, multiple Sleep Studies and 8 days Video-EEG all came back normal.
When it hits me, which is randomly in the morning once I wake up, all the symptoms are there including the muscle pain, the sleep depriviation, the mental fog, the concentration and memory problems along with unstable stomach.
The pain level keeps increasing rapidly if I don't use a prescriped pain killer and I can only sleep when I can control the pain a bit. If I don't sleep at all or my sleep is shallow or for only a few hours (usually I would need ~12 hours of sleep to recover) the symptoms would still be there or increased.
I kept reading so much for the previous few days and I am not sure now if it is really Fibro or not, but after 6 years of doing tests I am running out of ideas (and the doctors too!) that's why I am trying to figure it out myself.
The pain killers are the ones keeping me sane till now but I know I cannot count on them for too long and eventually they will develop tolerance even if I am taking them only when is absolutoly needed, but my pain level is so insane and that's my biggest problem. my fatigue and the sleep depriviation is there but it is not to the level of not being able to walk or do simple physical activities, I think the toll on my mind is much stronger than on my stamina level.
Why are you saying my symptoms are different from the other members here? what do I have that seems different?
Thank you very much Bron
..I can't wait for your reply and help