Fibromyalgia discussion ....

[madmum]

I did ask his physio but she was not enthusiastic about the subject,she said he is growing so that will have an influence. She did check his neck and found tightness when he tried to put his ear to his shoulder so gave him that as an exercise.

[trekster]

When is palpitations just part of fibro and when are they something else?

[trekster]

http://arthritis.about.com/cs/jh/a/hypermobfms.htm

Possible link between fibro and HMS which some of you might be interested in. Might be handy to show to docs
who think it's 'just fibro'.

[trekster]

Does anyone know where I can find myofascial release therapy on the NHS?

[AnnaH]

I could be wrong, but I'm increasingly sceptical there is such a thing as 'just fibro'. Everyone I've ever met with fibro either has an additional diagnosis (HMS, RA, lupus etc) or seems to end up getting another diagnosis shortly afterwards. I'm beginning to think that the rheumatologist who told me, way back when, that fibromyalgia was really just a symptom of something else, with the 'something' as yet undiagnosed, was right. Although this doesn't seem to be a popular view with either patients or doctors.

And just to cap it all, a friend who has allegedly had fibro for 20 years, has just found out she has lupus, and her fatigue is due to early-stage kidney failure!

I don't think I have lupus, or any of the other diseases mistaken for fibro (all of which I've been tested for), but I do have fibro secondary to HMS (HEDS). I also have autoimmune problems, a bone disease and metabolic problems, so I'm a pretty complex case. One doctor told me that its almost par for the course for people with complex medical problems to have fibro.

At first, the diagnosis was useful (got me my Blue Badge, for instance), but now it's an irritant. My new GP keeps referring to fibro when I'm trying to talk to him about HMS problems. He doesn't claim to be an expert on HMS, but he's been good, so far, at finding out more about it. But still, he seems to have a mental block. Maybe he's more comfortable treating someone for fibro than some weird, unheard of, connective tissue disorder?

Not that either condition is curable. It's just that, for example, I complained of shoulder pain. My GP says "Aches and pains are common with fibro". I say "It's not an ache and pain, its the result of injury - I subluxed it in bed the other day, and almost dislocated it! The muscle is all bruised and I've pulled my ligaments". "Oh dear," he says, "Sounds painful". Argh! Yes, there's nothing he can do, but it is so irritating the assumption that my pains are not related to actual injury. Most of my pain is because I've twisted something, tripped, banged something, subluxed a joint, dislocated a joint (usually fingers or toes) and generally battered my tendons. Call it fibromyalgia if you like, but the reality is, I'm injury-prone.

[trekster]

i agree with you anna. i used to be on butyoudontlooksick.com a while ago before the boards went down.
i noticed that a number of 'fibromites' ended up being like you said diagnosed with other stuff.

Personally when dealing with the doctor i would say to them, if i had hit a pressure point and not
sub luxed or dislocated something that would have been a fibro problem.

Do you think in order to treat fibro you had to treat HMS as well? My physio thought that as well.

[Louise]

This will prob get locked but i did search and couldnt find a thread, im sure there will be one around though

As my fatigue hasnt gone away since January ive gone back to the doctors and had more bloods which came up normal (not unexpected) but she brought up CFS and told me to come back in a month????
Im guessing so she can do some research into EDS and look and what it could be She even asked me what i think it is thats wrong with me and what do i want to be done? i just said i dont know but i would like to get back to some sort of normality as sleep and fatigue is controling my life and i am so close to loosing my job now.

Is there anything they can do to test for it or how can i point her in the right direction? ive done abit of web searching and i tick every box for it but cannot pinpoint a viral infection that kicked it off because i am ill that often its hard to keep track. (total of 3 months sick so far in 8 months, not in one go)

[madmum]

Not much help but I find severe pain and lack of sleep does not help the feeling of chronic fatigue.

[thalia]

Louise, although there abnomalities that show up in researching testing of CFS, there isn't a test they do for it. It it usually a diagnosis of exclusion - if you don't have any of the other fatigue-causing illnesses then you get diagnosed with CFS. Usually they will test for other thing first, like thyroid testing, full blood counts, etc. If they all come back negative then chances are you'll get a CFS diagnosis.

IT sounds like you've had all the blood tests, so from now on it'll largely be monitoring you to see if other symptoms crop up that could explain the fatigue, otherwise, yup, CFS.

I've had it for 16 years, so if you have any questions feel free to message me

Thalia

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[thalia]

Trekster, I had a look at the article on the link you gave. I was actually told many moons back by a physio that my hypermobility gave me a propensity for fibromyalgia. I don't think it follows, though, that having fibro means you are hypermobile. I know a few with FMS who wouldn't fit the criteria for HMS, and similarly, many of them have had it for a very long time and haven't got any diagnoses for anything else. I guess their doctors could be missing something, knowing the NHS ......

[Louise]

Thanks Thalia
she was very puzzled and yes they did full bloods including thyroid, blood count, diabeties etc which were normal. Think what im going to do is make like a diary of my week and take it into her in a month, she was asking what foods i eat, what excersise to which i told her i try but its hard because i find that if i go to the gym, i do like it and could easily spend hours there but the couple of days after i will struggle to even stay awake at work let alone get there lol. She is going to refer me to someone who will do light excersises and try to build up my tolerance?

Im drinking green tea at the moment which does seem to get me going in the morning til about lunchtime then il start day dreaming

[vespagirl40]

Hi all

Could I have some advice for my daughter please?

My daughter is 18 and has hypermobility, fibromyalgia and her GP has now confirmed that she agrees with our suggestion that my daughter is suffering fro chronic fatigue syndrome (CFS). It has taken over a year for the GP, neurologist (my daughter also has epilepsy) and rheumatologist to agree that CFS is her problem, this is taking all of her other conditions into consideration. The neurologist had diagnosed my daughter with narcolepsy, due to her need to sleep, exhaustion etc etc but that has been thrown out of the window.

My question is has anyone, who has seen a CSF specialist, come away from their appointment feeling like it was a complete waste of time?

We saw a Dr at St.Albans hospital who asked her questions, the usual. Asked if she was depressed, which she is, but this only came to the for because she cannot get doctors communicating and feels so helpless. She is taking anti-depressants for this but to be honest we haven't seen much change. Her two youngest siblings (15,10) have Aspergers and Autism and he seemed to latch onto this and say how hard it must be at home. We both said it wasn't because it had always been that way and you live your life with them the way they are. He also latched onto the fact that she has no contact with her father (her choice) and her siblings don't. He seemed to pressume that their was no other male figure in her life, but she has an older 21 year old brother and a step-father who has been in her life since she was 7. He told us that it is ore my daughters mental state that is causing CFS like symptoms and will tell her doctor this. Therefore, I am suspecting she is going to get referred for councilling, something she is not happy with. I am so angry because again everything is being placed back in my daughters lap to sort out, this is the reason why she is suffering with depression. It has taken onths of her jumping through hoops to get refer to this specialist and he has done nothing but compound the situation.

Has anyone any advice as to what to do next? I have said she needs to demand a second opinion but not locally. Is there anywhere that she can asked to be referred to that would understand all of this? i.e the link between hypermobility, fibromyalgia and chronic fatigue.

Thank you all

Emma

[thalia]

Louise, be very careful with the exercise referral. There is some contention about GET (graded exercise therapy) for people with ME. The research that says it helps 30% of people with ME is seriously flawed, and in practise it has been shown to make many ME'ers much worse. IT's fine to see the person, and take their exercise recommendations, but don't let them push you into increasing regardless of your symptoms, and if you get a bug during the course, do reduce your exercises again to ensure you don't worsen your health. If you want to know more pm me, I don't think this is the place for all the links to the reviews etc of GET for ME.


Emma, yes, I was seriously disappointed by my appt with an ME specialist. I had by the time I was seen developed Fibromyalgia syndrome as well. Because I listed all my aches and pains they said they 'didn't think' I had ME, but rather FMS (when I'd clearly had the ME first), but they could still offer me CBT. That was the only treatment they offered, and I rejected it, because I knew I didn't need it - I wasn't depressed just very tired and sore.

I was later referred to a clinical psychologist by a pain clinic consultant who had cancnelled treatment prescribed by a junior because my pain was too widespread. Turned out to be the best thing I ever did as the phychologist recognised I had no reason to be seen by her, and that got me proper treatment for my pain - it was accepted as 'real' after that. So I'd say get yoru daughter to go, even if it just proves she doesn't need it. It can open doors.

[Rosie]

Hi all

but they could still offer me CBT. That was the only treatment they offered, and I rejected it, because I knew I didn't need it - I wasn't depressed just very tired and sore.

I don't understnd this comment as CBT can help you to cope with pain and fatigue. I know it doesn't suit everyone, but it does help many of us with Fibro, HMS, EDS or CFS.

Rosie

[thalia]

I am aware of how much some people can benfit, and wholeheartedly support their use of it - I didn't mean to say anything to discourage others to go that route. As you said, though, it helps with coping with the pain and fatigue, not the actual pain and fatigue itself. I cope fine with them, always have done, but would like there to be less - CBT can't take them away.

It didn't help that I was seen at the ME clinic where the doctor who raised the hypothesis (widely adopted) that ME (and Fibromyalgia Syndrome too I believe) is an abherrant illness belief, and provided CBT on that basis (this was pre-PACE trial, but in his lead up study and treatment development) was based. I didn't know any of that at the time, but got a feeling at the appointment with what the registrar said that it wasn't going to help me, and I've since had it confirmed that my CB techniques are such that it wouldn't have done.

Multiple problems there, then - wrong clinic to be seen at and wrong brain to benefit. Apologies for my lazy phraseology earlier