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The UKFibromyalgia Forums • View topic - Have I got FM or what??



Have I got FM or what??

All your fibromyalgia experiences, questions and answers.

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Have I got FM or what??

Postby barmiearnie » Tue Jan 29, 2013 2:17 am

Sorry for the length of this but here goes..
Really all started one Sunday afternoon in February 2010 with headache that lasted 3 hours.
I couldn’t move, never had anything like it before.
They became frequent around 3 times a fortnight. I was prescribed Solpadol which helped and after several months was given nortriptyline which stopped them. I stopped taking the nortriptyline several months later.
I was also getting a lot of pain in other places, dizzy spells (being pushed), floaters in eyes, blurred vision, high blood pressure (bit low now), severe anxiety, panic attacks, severe insomnia. Ear irritation, Tinnitus and TMJ, noise has doubled in volume.
Persistent tiredness and fatigue. Have tried to work out on our cross trainer purchased especially but makes matters worse. Could do 20 mins early days.
Just about manage 2 minutes now but don’t bother to as makes things worse.
I have tried gentle aerobics but some hours later get horrible pains.
Lost 2 stone in short period for no reason last year but dietologist said probably due to extreme pain. Have since put on weight but think weight down to the meds and the craving for sweet things plus pain attacks more frequent and longer lasting, and so not been as active.
Still get headaches, but nothing like as bad as they were nearly 3 years ago.
Apart from bad one other day!
I get different pains, they seem to be from hips down to feet and from head down through shoulders to hands. Chest & stomach are fine, although always losing voice due to lump im throat!
I couldn’t stretch or use my right arm much due to pain in top of arm for almost a year. X-ray showed nothing!
Hands hurt most of time, have to be very careful when washing or drying myself and steadying myself like on stairways etc.
Sometimes I handle something and I feel like I’ve just been hit with a hammer on sides of either hand. Recently fingers are painful on inside of joints where I hold a mug of tea.
Pain in legs, all types and at times so bad I can hardly walk. I have to have electric blanket on most days & nights (summer as well as winter) else feet/ankles get cold then more pain that lasts for hours. Get same cold type pain in wrists and fingers. Finger tips in the cold go wrinkly and then I can’t bear to touch anything with slight rough surface.
Pain in back is ok if I don’t do anything. Something simple as walking, standing & even sitting for too long will give me back problems for days. If I carry anything it can really hurt my legs as well as my back.
A few times in the morning when getting dressed, I’ve put my back out and cannot stand up straight or walk well, it lasts for several days.

First neurologist said I have Cervical Spondylosis, 2nd neurologist said I had nothing neurologically wrong but obviously had problems

My GP, a hospital doc at A&E and 2nd neurologist tested my balance, I failed

I have attacks where I come over feeling really ill, really weak and with aches all over. Everything has got worse and more frequent.
I get tender skin, fingers, soles of feet etc. like tingling or stabbing needles. Sleep problems are heart beating fast, eyes rolling around when shut and tinnitus loud, mind thinks of horrible things all the time. Trazadone really helps with sleep, I wouldn’t get any without but I also need bit of xanax or diazepam during the day to be certain of a nights sleep. I also have to wear ear phones and fall asleep to the radio or TV, talk not music. Impossible to relax enough to fall asleep otherwise.
Tried increasing dosage of Gabapentin but it instantly brought back insomnia.
I don’t think I need it anymore, it seemed to help at first. I also think I need to stop the BP pills as BP is low at home.

I now spend most everyday in bed working on laptop with electric blanket on, high, low up & down all the time. I’ve been doing this now since mid summer.

I like to go out, walking & shopping at weekends but can only do this if I take xanax and then I can only do about 3 hours before the pain kicks in, xanax wears off and I have to get home to bed.
If the cold gets hold like it does more so now at this time of year, it’s agony!

I can’t stand loud noises, people talking or laughing in restaurants’ etc. I have to block ears or leave.
Certain smells make me feel ill. For example: plastic bottles that spring water comes in haunted me for days!
I hate bright light indoors; I would rather sit in a room with blinds closed.

It takes ages to wake up in mornings, for my voice or my eyes to work. I always now since sleeping well, wake up with pain all over. Doesn’t bother me as anything is better than lack of sleep!
On Saturday all my symptoms were really bad, so bad that all I could do was watch TV. On Sunday however, I felt far better than I do most days!
I can be out driving or lying in bed watching TV, there is no set pattern and many symtoms I've mentioned here, come, stay for a few months then go

My feeling ill attacks seem to be getting worse and last 2 to 3 hours. Attacks have also become more frequent, 1 to 4 times a day.
Feel ill, feel sick, pains in lower legs, ankles and feet, feel hot, shallow breathing, blurred vision, sunken face and grey in colour. Hence I joined this forum
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Re: Have I got FM or what??

Postby denys » Tue Jan 29, 2013 2:23 am

We arent health professionals and cannot say whether or not you have fibro, go back to your doc and ask them if they feel this is a reasonable diagnosis. If they arent willing to diagnose you then ask for a referral to a rhuematologist. I hope you get some answers soon
Denys

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Re: Have I got FM or what??

Postby barmiearnie » Tue Jan 29, 2013 4:09 pm

I obviously worded my "title" incorrectly, I'm not asking for a diagnosis. I thought this was a forum abot fibromyalgia, I didn't know you had have FM to request help. I just thought if I put down my symtoms that maybe someone would relate to them and perhaps help me.
You can't expect a GP to say that whatever I think is wrong with me is a reasonable diagnosis. I've seen a rumourologist and he was the one that brought up the subject of FM, he said "we'll exclude FM for now. He sent me for an EMG, clear. I'm next due to have a full bone scan.
Thanks very much indeed for your help, I feel so much better wasting my time
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Re: Have I got FM or what??

Postby bridesmum » Tue Jan 29, 2013 4:38 pm

Hi Barmiernie, A lot of your symptoms sound very similar to mine and I was diagnosed in 2002 with fms and recently saw a rhumatologist as I want to be reffered to a fibromyalgia group at the hospital. The rhumatologist re=confirmed the diagnosis and referred me to fm group. I've since had a letter telling me that I'm on the waiting list, but it could be some months until I get an appointment. If I were you I'd go bck to your gp and tell them how bad things are and ask for him/her to send you to a rhumatologist. I don't think they can refuse this and you can't carry on with these problems.
Take care, Deb
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Re: Have I got FM or what??

Postby love my greyhound » Tue Jan 29, 2013 6:53 pm

hi Barmiernie, just read your post, I feel so sorry for you, you came on here after advice and support (not a diagnosis) I geel for you as I too thought that one of the replies was a little abrupt. Where you are now, you are in between having many symptoms and trying to get some sort of diagnosis. All of us that have been diagnosed have all been inbetweeners at some point and know how flippin frustrating it it. I do have MANY of the symptoms you have particulary the hip pain down through my knees and feet, hands that simply dont work due to pain. I also know about loud noises. I did just wonder if you also suffer the "fog" that most of us have. Really bad short term memory problems, often forgetting what i'm on about half way through a conversation, concentration so bad that i no longer have telephone conversations with my friends because i cant remember what they say, i tend to communicate through text or e-mail so previous conversations are held on record. Please dont give up getting a diagnosis, take care..xxx
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Re: Have I got FM or what??

Postby shazq » Tue Jan 29, 2013 7:11 pm

Hi Barmiernie

Your title was Have i got fm or what? then you put down all your symptoms.

Denys just wrote a reply to your post pointing out that we are not health professionals she was unable to answer your question, we have to point this out to our members as we often get asked this question, we can only reply that it is best to read through the forum & write down your symptoms (which you already had done) then take it to your gp.

We always have lots of help & support on here.

:welcome: to the forum
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Re: Have I got FM or what??

Postby denys » Tue Jan 29, 2013 8:30 pm

Sorry you feel that you were wasting your time :!: the title of your post was not asking for advice but more 'have you got FM or what' sorry I misunderstood, maybe this seems like a mardy reply but we moderators are FM sufferers as well and sometimes we feel like its all just a bit too much so for those who feel my reply wasnt supportive enough very sorry but in a flare myself at the moment
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Re: Have I got FM or what??

Postby FluppyPuffy » Tue Jan 29, 2013 9:02 pm



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Re: Have I got FM or what??

Postby barmiearnie » Tue Jan 29, 2013 9:19 pm

Thank you so much Deb & love my greyhound!
Deb I have seen a rumourologist :) and before any doctors will go further, they await for my bone scan results. How do they confirm FM? I've read about pressure points but I've been pressed and poked & nothing, no pain! A female friend of mine is in a wheelchair with FM due to trauma from 2 spinal ops, so b4 I say my next bit, I fully understand that FM is a serious illness but, am I like many others I guess, just going to be sent for a few tests, plied with pills and if nothing is found positive, get diagnosed with FM?
And greyhound yes I do get the fog, I'll stare into space, completely forget what I'm doing seconds prior and I'm always saying sorry for forgetting what I'm talking about!
Anyway on a lighter note, I woke up this morning feeling ok and have got this far in the day without any pain (VERY rare) so feel pretty good, thanks for the support guys x
Oh and shazq, I do realise that you are not health professionals, else my GP would be out of a job!! I have read the forums, I've read everything there is to read on the internet & cannot find anything or anyone with the same symptoms oher than possible FM and yes I have taken my notes with me when seeing orthopedic surgeon, rheumatologist and neurologists but not all of them will read notes and expect you to explain it in your own words. Well that was the second neurologist who said he found nout wrong yet the first neurologist said I had spondylosis!! I don't trust them, 12 years ago I was shown xrays of my spine, 3 near non existent discs and vertabrae crumbling together, too badly worn for an op. Yet, other week I was shown MRI of my spine which showed perfect discs and very slight wear on vertabrae with a discharge note saying no need for an op!! go figure that out!

Just seen note from Denys, sorry, I know how you feel, the whole business is very frustrating & stressful I'm sure for everyone. I can only write while I'm not on a "flare up" else I'd be banned promtly :)
And your post Lisa. thank you. I was diagnosed with TMJ and given a mouth guard but that aggravated my insomnia.

Oh and fluffyhuffy, thanks for your tuppence worth, sorry I wasn't understanding of the reply I received .... I'm off now before I say anymore. Seems my good day is ending on a downer
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Re: Have I got FM or what??

Postby denys » Tue Jan 29, 2013 9:33 pm

Dont let this end your good day badly, we do understand only to flipping well :!: :!: :!: :!: :!: The thing is with FM health professionals cant even agree with the cause treatment or diagnosis which makes things so frustrating for us all.

The tender point test is still supposed to be the most reliable test but it isnt conclusive, others on here have been diagnosed without it so :dunno: :dunno:

Hopefully once all your tests have been completed one of your specialists will be able to give you the correct answers and just as a note, you are very very welcome to join us on this forum
Denys

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Re: Have I got FM or what??

Postby barmiearnie » Tue Jan 29, 2013 10:10 pm

Thanks Denys, may all your flare ups be short and your good days/hours be plenty x
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Re: Have I got FM or what??

Postby denys » Tue Jan 29, 2013 10:15 pm

Thank you yours too :-) :-)
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Re: Have I got FM or what??

Postby tonydin » Wed Jan 30, 2013 7:47 pm

hi i have has most of your syptoms at one time or another :lol: including disc damage that seems to have dissapwered on a mri 20 years later .
your on the right road they will test for every thing a nd then look at fm .. but if you have no tenderness when tested its unlikly tou wikk end up with a fm diagnosis , it is a prerequsit for the condition
i only had 8 points but was still dx with fm i agree not knowing what is wrong is the worst thing
tale care
tony
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Re: Have I got FM or what??

Postby fatanne1 » Wed Jan 30, 2013 11:06 pm

hi what a heated page, and I think everyone will agree when your struggling as much as we all do you are bound to be bloody grumpy,on the fact you have no dxs it took me 10 years and it was only after surgery nearly 3 years ago that finaly 1 doc finaly dxs me, id been tested for anything and everything rheumatoid , ms, sometimes I think docs will tell you anything to make you go awy, I realy hope you get some closure soon as its isolating and frustrating, I realy felt iwas going mad.(sometimes I still do)lol. but be warned even with dxs docs are stumped as what to do with us, in 3 years ive tried everything even complmentry herbal stuff 5htp worked well but think I became immune. sorry don't want to make you feel worse you came on here to be cheered up a little I suspect I know idid :crazy: . but keep posting you may just find something to brighten your day. lol. I found shaz post on the kind of greaving process was very insightful. please stay strong we realy do get it. :-? one day they may find a cure derr!!!!!!!..xxxxxxxxxxxxxxxx
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Re: Have I got FM or what??

Postby charley » Sun Feb 03, 2013 11:13 pm

Dr's etc try to rule out other conditions before diagnosing FMS, so you'll probably end up having a lot more tests before getting any kind of diagnosis. It took 4 years for me to get a firm diagnosis and was diagnosed with something different every time I saw the specialists at the hospital. Unfortunately it's all a bit of a waiting game
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