Not sure: I experienced past six year... - Fibromyalgia Acti...

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Not sure

Faay profile image

I experienced past six year severe headache and pain all over my body. I consulted several doctors (GP and specialist) and did several CT scans, MRI and Xrays. Everything seemed normal, and the only medicine they gave me was pain killer. while conducting some google search just to find an answer of all these, i came cross fibromyalgia, and had all the presented symptoms except sleepless. I perfectly sleep night and some times day times.

What could it be?

16 Replies

Actually yes it could. It's something to talk over with doctors though. People tend to have different symptoms of Fibro.

Faay profile image
Faay in reply to Regnofibro1

Thank you,

Hi faay, it is not just sleeplessness, it is sleep without feeling refreshed so you may sleep for ages ans still be tired, hence sleeping during day too. I used to be asked if i had problems sleeping and always said no as my problem was trying to stay awake ! Maybe would have been diagnosed earlier if i had said yes. Ended up being diagnosed after i fell asleep on examination couch, rheumatologist left me there when he went out to take phone call, by time he came back i was asleep !! So yes, i would suggest to your gp this could be whats going on.

Faay profile image
Faay in reply to Shazzzy

Thanks Shazzzy for sharing your experiences. Yes, I sleep like a baby, but when I woke up I cannot move even a figure, and lie on the bed for more couple of minutes, and that feeling of tiredness severe headache and laziness might continue all the day. I always skip going out for socialization due to inability. I dnt drink or smoke, I cannot describe myself clinically depressed, but after reading nowadays about fibro the only prescribe medicines are antidepressant (I really don't like taking such medicines or in other words I worry about stepping in such line) . Thanks I will definitely visit to GP soon, finally apologizes for my poor English (it isn't my 1st language)

Hi faay, your English is very good for a second language. I too do not drink or smoke and miss out on socialising. But i do push myself to go out for lunch with a good friend who understands my illness. Anti depressants are definitely not the only medicine available, i take painkillers, neurological drugs, migraine nasal spray and vit d. Most people with fibromyalgia have very low vitamin d levels, which is a cause of muscular pain and spasms. This canbe easily checked via a blood test. Other ways of helping yourself without drugs include, heated wheat bags, hot water, gentle stretches, tens machine for pain, deep breathing and meditation and pacing yourself to do a little at a time then rest whatever your illness may be. All the best for the future,

Faay profile image
Faay in reply to Shazzzy

@Shazzzy. Once again I do appreciate your honest and genuine advise. somehow it gave me relief. Thanks, and I will keep posting

Hi Faay, I'm new here. I was diagnosed just a few weeks ago by my GP. I was puzzled as I was asked about sleeplessness too, but like Shazzzy, my problem was staying awake during the day. Whenever I sat down I would fall asleep. I had been worrying that I was having to sing when driving to keep myself awake. I could fall asleep sitting on the edge of a chair with no support at all. I was given Amitriptyline and it has made a huge difference to my ability to stay awake, so I must be getting better quality sleep at night. I was worried about taking antidepressants when I wasn't depressed but it has made a difference to me. It also seems to be helping my muscle pain most of the time. When it is bad I take painkillers. I still suffer from stiffness for most of the morning and do everything at a snail's pace with lots of rest breaks, but I am feeling much better than I was. I hope you can discuss this with your GP and get some medication which helps you. Best wishes.

Vicster52 profile image
Vicster52 in reply to florence5

Hi Florence, I too was put on Amitriptyline, but it wasn't for depression, it was to relax my muscles, and any soft tissue pain. That was suggested by the doctor on the pannel of 1 of my earlier Tribunerals. It also helps for you to go to sleep, not keep you awake. So when you say it helps you stay awake, I am quite baffled. Most of the ppl I know with Fibro (n trust me I know quite a lot) also say that too. Shrugs shoulders!!!!! X

maggi999 profile image
maggi999 in reply to Vicster52


I think Florence means that the Amitriptyline helps her get better sleep at night, so she doesn't fall asleep during the day.

I have certainly found that Nortriptyline (only 30mg per night - rather than the therapeutic dose for depression at 300mg) has helped me sleep better by reducing muscle cramps, spasms and RLS.

Maggie xx

florence5 profile image
florence5 in reply to maggi999

Thanks Maggie. That is exactly what I meant. Although I slept at night, it could not have been a proper deep sleep and therefore I was always nodding off during the day. Now that the Amitriptyline is helping me have good quality sleep at night, so I am not so drowsy during the day. I don't know anyone with Fibro, so can only talk from my own experience.

Hi Florence5. Thanks for sharing your experiences and I glad that you are feeling better now . Did you by any chance also experienced severe headache? hope my GP will understand well the problem, as there are plenty other diseases with similar symptoms What dose of Amitriptyline start with your case? thanks

florence5 profile image
florence5 in reply to Faay

My headache was dull but persistent. It is worse when my body aches as well. I was given 10mg and was told to take one or two. It made me really drowsy for the first two weeks. I took just one a day but then had a couple of days of worse pain so starting taking two a day and feel better now. I've to go back to see my GP once I finish the tablets to let him know how I've got on. It's early days for me so I don't know how it will progress. I had blood tests to rule out other conditions. Let me know how you get on with your GP.

ailsamary profile image
ailsamary in reply to florence5

treatment dose for fibro is normally between 30-50mg

florence5 profile image
florence5 in reply to ailsamary

Thanks for that info. I think perhaps my GP is building the dosage to find the lowest effective dose for me, as he has done in the past with my blood pressure medication.

Fibromyalgia presents to us all in individual ways. Just because you sleep better than some of us doesn't mean you don't have FM. Like you and others have said in the replies, you may wake up unrefreshed or feeling exhausted during the day.

When I went to my GP, I told him I thought I had FM. He sent me to a pain specialist; some go to a rheumatologist, or neurologist. I think in the UK, the usual start is a pain clinic? (probably got what you call it wrong)

Fibro is something doctors sometimes use as a catch all phrase meaning they don't know, suggesting that you have what sounds like this "syndrome." We know better. It is a disease and too many doctors either don't understand it or are disbelieving. As are too many people in general; I think because it has not yet been labeled as a legit disease hope you don't find this to be the case with your doctor. We are not hypochondriacs!

Thank goodness there are lots of supportive members here who can help you out with this and give you their thoughts.

Healing thoughts from me. The members here will help you cope, anytime you need to rant, ask for advice, etc. And there's lots of laughter her too, I hope you will enjoy that. You know, if you couldn't laugh . . .

Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! As the others have said, Fibro affects us all differently. So it could be beneficial to discuss the possibility of Fibro with your GP to ascertain their thoughts. It may help to ask for a referral to Rheumatology who diagnose Fibro in a great deal of cases.

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you


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