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Fibromyalgia. Anyone suffer from it?

(31 Posts)
foxinsocks Sun 16-Apr-06 19:34:57

Healthwise, I've had such a nightmare year having hardly ever been ill before last year. Suffered a nasty allergic reaction to the mirena coil (Feb/March 2005) and have really never been the same since.

After that, started getting terrible migraines and flu-like aching in my legs and my neck/lower back with dreadful tiredness. Coupled with this was nausea, twitching eye, going to the loo more often and sometimes (but not always) rashes on my knees/elbows. This happens for about 4-5 days twice a month.

Went to the doctor and they tested for lots of things but apart from a lower than normal white blood count and anaemia, nothing was irregular. She told me she thought it was a virus (I'm pretty sure it isn't) and sent me packing telling me to take nurofen for the migraine. I was furious especially as I feel this is impacting on me going back to work - until this is sorted, I feel I cannot (with a clear conscience) go for a job knowing that I would not be able to manage for around 10 working days each month!

Anyway, decided to have a look on the net after discounting most of the major illnesses through the blood test and have found fibromyalgia and my symptoms seem to fit. Have also seen that doctors seem to be quite hesitant to diagnose it, even though it is recognised by the WHO, as some see it as a 'mind illness'. Just wondering if anyone else has it.

Greensleeves Sun 16-Apr-06 19:48:47

I had it for several years when I had ME. The two are often linked. I actually managed to have it diagnosed at Derriford Hospital in Plymouth too, after being told by countless doctors that I was "imagining" the excruciating pain, blinding unrelenting headaches and virtual inability to walk

I am now completely recovered, although I do still suffer with occasional migraines and have painful muscle tension in my neck and shoulders (it's NOTHING compared to the hideous pain of fibromyalgia).

I found that the key to recovery was rest, rest, rest - then , when you start to feel better, gentle, gradual exercise. Also changing your diet to include lots of fresh, simple foods like fresh fruit/veg, lean fish/poultry, lots of water etc. Also try eating lots of brown rice - it has something magical in it for ME/fibromyalgia sufferers, something to do with healing the myelin sheaths in your nervous system.

I'm so sorry you are suffering with this. I know how unbearable it can be, especially when you are bounced from one doctor to another and accused of everything from hysteria to downright lying. Take it slowly, rest a lot, sleep as much as you can. I didn't find any drug treatments/pain killers helped me apart from dihydracodeine for the really shocking head pain. I did find that relaxation/breathing exercises helped me a lot though - it's hard to explain, but when you are in intense pain for a long time you tend to panic and thrash about, and it makes it ten times worse - breathing and calming exercises can help you to pace yourself and also to sleep better.

Good luck, I hope you start to feel better soon.

foxinsocks Sun 16-Apr-06 19:58:29

thanks for that - it's good to know that it's possible to actually feel better again - I was beginning to wonder if I should just retire with my pipe and slippers! What I find weird is that I don't have it all the time. Certain things seem to set it off - the cold is definitely one of them (like a very cold wind) and my period is another but apparently (according to the uk fibro website) this is quite common.

I am sure the doctor will try and get rid of me again but I just cannot let that happen this time. I have read that doctors often link it with depression and anxiety - well I can tell you I have never been depressed or anxious before this but having suffered now for months, in fact almost a year, I'm starting to get mighty pissed off that no-one is taking me seriously! Even if they just treated the migraines that would be a massive improvement for me.

I do the breathing stuff to get me back to sleep. I find it's the only thing that works. Thanks for the well wishes. I'm going to book an appointment at the docs next week once the kids are back at school.

foxinsocks Sun 16-Apr-06 19:59:42

(am also secretly horrified that you suffered for years you poor thing)

foxinsocks Mon 17-Apr-06 15:08:46

just a bump to see if anyone else has ever had something like this (to see if I am completely on the wrong path!)

tribpot Mon 17-Apr-06 16:13:02

My dh was diagnosed with it in 2004. He thinks he has suffered with it all of his life to one degree or another. It is an illness much more commonly found in women than men, so help for him has been especially difficult to come by.

The journey both to diagnosis and subsequently has been incredibly difficult for both of us. At the mo dh is at a stage where he is basically housebound, very depressed and in a massive amount of pain every day. But he looks fine - my brother asked me yesterday "so when is dh going back to work?" WTF?

The main thing is that if you suspect fibro, which seems reasonable under the circs, you push for a referral to the rheumatology department. The rashes on your joints I find interesting as well (well, not that I want to come round and have a look at them you understand!) - dh has various skin complaints which may be linked to some kind of rheumatoid / autoimmune jiggery pokery.

Try to avoid the route we have ended up in, where dh is addicted to many extremely heavy-duty pain killers. In retrospect I should have pushed back harder on this from the beginning, esp as we have recently been told he's probably infertile now as a result of long-term morphine use. (Fortunately this "should" just be temporary).

As Greensleeves says, and as you've found yourself, you will get the brush off from the medical profession countless times. It pays to keep notes of all your appointments and to try and remain focused on the fact that doctors are not actually evil (despite appearances!) but are struggling with big workloads, masses of bureaucracy and like all of us they prefer the things which are easy to 'fix'.

Yes, you will find some who deny fibro's existence entirely, I find it's best to be quite clued-up yourself. Some very useful books:

Living With Fibromyalgia

The Fibromyalgia Handbook (I haven't read all of this yet, but I found less hocus-pocusy than a lot of American books on the subject)

Fibromyalgia: Simple Relief Through Movement .

There are a lot of allegedly magic cures for fibro being touted, guaifenesin is one, some kind of weirdo salts being another I've read about. Things which have helped dh to some extent are acupuncture and hypnotherapy, to help manage the pain. As Greensleeves says, the important thing is rest and gentle exercise. Unfortunately in my dh's case I don't know how to reduce exercise to the point where it will become manageable, or how to get him enough rest - as it is he sleeps until lunchtime and we have a 10 month old baby (and I have to go to work).

Sorry, I have waffled on for ages but fibro has completely consumed my life despite not being a sufferer myself. I feel very unhappy realising what my life has become as a result of this awful illness and the grim prognosis for our future. So apologies if the tone of my post is not as supportive as it should be. In general female sufferers tend not to become ill to the same degree, and there is no reason for you to suppose based on my horror story that you will end up like my dh.

I do believe the key things are what you are already doing, keeping a positive attitude, taking charge of your condition and seeking treatment, and finding support. There are various support groups out there, I assume you have found the Fibromyalgia UK website. Well worth following these up - of course, my dh has refused to have anything to do with them, usual bloke's excuses.

I assume you are having poor sleep, if not, I would guess you may well not have fibro but some other condition in the same family perhaps.

If you'd like to contact me off board (where I shall attempt to be a bit less miserable about the whole thing) please send me an email - tribunicia underscore potestas at hotmail dot com.

Take care, and all the very best.

foxinsocks Mon 17-Apr-06 16:25:09

poor you tribpot - no I don't mind the pessimism (must be very difficult for you). Would rather hear the truth. So your dh is seen by a consultant is he?

Luckily (I think), I was very fit before all of this started happening. What first started me thinking something was up was that my fitness level literally dropped like a stone all of a sudden - where I could jump in a pool and swim 20 lengths, I'd jump in the pool, do 2 lengths and almost pass out. I've tried to keep relatively fit but it's an incredibly hard balance - too much exercise sets off all the symptoms but too little and that just adds to the problems in the long term.

I'm intereted in your dh's rashes - when I last saw the doctor (before Xmas) she insisted she had never seen rashes like I had before. I haven't had them very often since then but it was one of the reasons they tested for lupus and other autoimmune diseases (in fact, the lower than normal blood count suggests an autoimmune problem but they could not find one in my blood!).

I'm sorry your husband has ended up depressed - I can see why it could lead to that. Is he on antidepressants? I see the main line treatment is low-dose amitriptyline - I'm hoping that this may stop my migraines if nothing else!

I'm trying to remain positive but I am really pissed off. To a certain extent, I'm not enjoying life half as much as I used to - lots of things (like taking the kids to school) can feel like a real chore when I'm in pain/have a bad headache and I've virtually stopped going out in the evening but I am determined to sort this out now. I just hope the GP will listen and try and help.

foxinsocks Mon 17-Apr-06 16:26:20

thanks for the links

tribpot Mon 17-Apr-06 16:46:23

foxinsocks, was this doctor who saw your rashes your GP? If so, not flipping surprising she hasn't seen them before - contrary to what they believe, GPs are not all-seeing, all-knowing oracles of medicine! A rheumatologist will probably look at such things a dozen times a week (not really a good advert for becoming a rheumatologist, admittedly!), that's their job. Dh's thing is more like warts that manifest in patches over the joints.

Lupus was one thing suggested for him too, and I actually thought the only reliable test was a short course of steroids to see if this brought about a dramatic improvement. (Didn't work for dh but he was half-dead at the time so not really a fair test). Again, a rheumatologist is what you want for this.

There's clearly no reason why your fitness level would just suddenly tank, and doctors should take notice of that, keep banging on that drum whenever you see someone.

Dh has seen the following consultants:
- a gastroenterologist (as at first we suspected something like Crohn's - he has excrutiating abdominal pain)
- a liver specialist (can't remember why, moderately elevated liver function tests I think)
- a pain specialist, aka the morphine peddlar. In reality a very good bloke and the pain team may well be your best port of call as well, as often the treatment for chronic pain is the same regardless of the condition being treated
- a rheumatologist, who said "yes, fibro, can't do anything, hasta la vista"
- a whole bunch of people in hospital, including a psychologist who recommended cognitive behavioural therapy. I thought this would be a very good idea but when we saw the CBT specialist, dh made out he was fine so she said "you don't need to see me" (this was a private referral, so in fairness she must really have believed that to be true).

Since we moved to Leeds in November, we have been assigned to a new pain team, who are very good, although I have had a row with the consultant as her knowledge of fibro seems a bit lacking for me. Dh has seen a respiratory consultant for a sleep study (as he may have sleep apnoea), this week we are off to see an endocrinologist for tests to see what effect the prolonged use of morphine may have had, waiting on referrals to rheumatology (again, dunno why) and clinical psychology.

The latest masterplan is to spend the next six months getting dh off all of his meds. Which means we will have spent two years achieving absolutely nothing. Dh has asked for them to consider an ultra-rapid detox (the sort a heroin addict might go through) but they are unwilling just now.

He does take a low-ish dose of amitriptyline, I don't think it really helps with his sleep now although it did at the beginning.

One problem you may find is that the more specialists you see, the more they will believe you are just flailing about looking for any specialism to take you seriously, Munchausen's stylee. One of the GPs at our old surgery I am convinced thought that dh (or perhaps I) was drug seeking. I occasionally get suggestions of things I might try from friends and I have to say "I cannot go back to the GP and ask for another referral, it just does not work that way". The bafflement of other people as to how you can look okay but actually be extremely unwell is one of the major barriers for anyone suffering this type of condition - in my case I am absolutely hacked off with people saying stuff like "he should just pull himself together", "my aunty Mabel had that and this organic drink made from Amazonian leaves sorted her out no bother" and "WHY can't the doctors sort him out?" (like this is my personal fault!).

I also have a couple of DVDs I got from America which might be useful. One is about fibro generally, one is some stretching/breathing exercises. Will dig them out and let you have the URL.

granarybeck Mon 17-Apr-06 16:52:10

Foxinsocks - I was diagnosed with fm a few years though have since had other diagnoises (sp!). I would second the recccomendation of The frybromaligia handbook. I just wanted to add that with regard to your work, some people with fybromyalgia do meet the definition under the Disability Discrimination Act, so any employer would then have a duty to make reasonable adjustments to your working arrangements. Best of luck x

foxinsocks Mon 17-Apr-06 17:03:15

I too get it in patches over my joints. I get it on my elbows and my knees. On my knees, I have 2 plaque like (almost psoriasis like but certainly not silver coloured like psoirasis plaques are) areas which stay constantly like that - they are very dry and they are deep purple/brown in colour (very attractive). More often than not, when I get an 'outbreak' of the illness, I start with feeling cold, then feeling fluey-achy, then the rashes come on my joints as the pain arrives, then my stomach goes and the migraine/neck pain starts. The rashes used to be blister like, red raised bumps on my joints - now they are far less red and are more like raised pimples around my joints. Sometimes it is only one or two - about 6 months ago, there would have been about 10 on each joint.

You can test for lupus with a blood test - they look for elevated ANA levels. It's not 100% accurate - some people have elevated ANA levels anyway and a small proportion of people with lupus don't have elevated levels but that coupled with mild anaemia and a lower than normal white blood count is pretty much seen as a definitive lupus diagnosis (so GP told me).

I am worried about the hyperchondriac/Munch factor. The reason I haven't been back to the doctors is that I have been loads in the last 2 years - mainly for contraceptive matters but I have been twice for this problem already and have got nowhere. I'm going to a different doctor this time but I'm not going to hold my breath. If they won't take my other symptoms seriously, they will have to listen to my migraine problems because I cannot continue having those all the time.

Funnily enough one of my first thoughts (last year) was Crohn's/gluten intolerance because one of the most annoying things for me (after the headaches) is the nausea/tummy pain.

I'm sorry you are going through all of this - it sounds like a terrible trial for you (and dh). I'm amazed the rheumatologist couldn't think of anything to help him - surely it falls under his remit. I hope the sleep specialist can help your dh. I have read that some believe that alot of this is caused by not getting into that proper deep sleep stage.

foxinsocks Mon 17-Apr-06 17:04:39

thanks granary!

foxinsocks Mon 17-Apr-06 17:18:58

(should say gp meant diagnosis of lupus by blood test with the lupus conditions so not on blood test alone)

are you working at the moment granary? what other diagnosis did they come up with?

peaches27 Mon 17-Apr-06 22:19:15

I have fibromyalgia and I was diagnosed 2 years ago, not through blood tests - my blood tests showed that I didnt have arthritis or anything else. It was diagnosed by pressing certain tender points on the body.

I have had lots of ups and downs and am currently OK, but I had to give up work 2 years ago, and when I need to rest I just have to. I cant iron or hoover up either as this causes too much pain.

I wont write a lengthy thread, but what caught my eye was the mention of the mirena coil. I also had it and it made my symptoms worse, but this was 2yrs approx. prior to my diagnosis. Many other gps gave me other diagnoses, but I know the one of fibro is correct having read up on it and it fits me to a 't'.

I suffer from IBS and depression which is also part of the syndrome, as well as pain in the lower back and either shoulder, sometimes legs, sometimes arms ... A TENS machine is good, also find the best painkiller for you. Rest when you need to. Contact me if you want to talk about it.

You will have good times as well as bad. Fluctuations occur with the weather. Summer should be good for you.

tribpot Mon 17-Apr-06 22:53:34

peaches, funnily enough, the existence of tender points is one of the things my dh's current pain consultant is denying, she reckons "if you poke anyone in those points it will be tender" (I do not believe that to be true).

And dh's previous pain consultant said that using my TENS machine would not be helpful - okay, mine was for labour, but the only real difference is in the modulation of the pulse I think. Dh said he'd tried it and found it quite useful, and the pain consultant's response was "it won't help". Cheers then!

I have to say, though, this thread is making me reconsider dh's diagnosis, as he has nothing approaching a good day, and cannot do anything, never mind ironing or the school run. (Not that he should do the school run when ds is 10 months old, that would be strange).

fox - fibro does fall in the rheumatologist's remit, but there is nothing that can be done. It is a semi-pointless diagnosis in that it makes the sufferer feel better to know they are not imagining their symptoms, but they can't do anything to alleviate them.

foxinsocks Tue 18-Apr-06 09:52:38

tribpot, is it the pain that's stopping him doing anything?

I think what doctors do is they run the blood tests and once nothing comes back positive (in the arthritis, rheumatic and immune bits) and they rule out neurological causes and it fits into fibromyalgia, that's what they call it. It's a bit like ME in that respect in that because there's no test for it, you can shove people into a category if their symptoms fit.

I wonder if his depression is quite a major factor - I haven't had it but my mum did and even without the pain in the joints, it can be a completely debilitating condition (perhaps you should see if you can persuade him to have CBT again).

Peaches - that's really interesting about the mirena. I have read that some think fibro has a trigger (a major stressful event like an accident or a major health problem) and I, personally, feel that my mirena reaction was the start of all these problems.

I'll let you know what the doc says. Hopefully I'll get an appointment in the next week or so.

tribpot Tue 18-Apr-06 19:28:08

Yes, foxinsocks, the pain prevents him from being able to do anything much really. Going to the hospital is enough to knock him for six for a good few days afterwards. It seems hopeless.

We're waiting for a referral to clinical psychology, he really must take up this option this time.

tribpot Sun 23-Apr-06 11:22:42

fox - this is the website I was talking about, Dr Blair Lamb (surely not a real name) is apparently an expert on muscle dysfunction, we have 2 DVDs, "Stretching for Fibromyalgia" (which I think dh has done once) and "Understanding Fibromyalgia" (which I don't think he has ever watched).

I shall attempt to inspire him again with these as a result of this thread!

tribpot Sun 23-Apr-06 11:27:12

Sorry, try this - straight to the fibro part of the site.

foxinsocks Wed 26-Apr-06 17:52:12

Thanks for that tribpot

Well have just got back from the doctors. Part of me wonders why I even bothered in the first place. Despite trying every day for over a week, I couldn't get an appointment with the nice doctor that I wanted to see (and the only one who knows the whole Mirena history) so saw another doctor. I had to re-tell the whole story from the start - she took notes and then looked completely blank. She then ordered (yet another) blood test - I said to her that I had just had a whole lot done last year and she said she had to check my iron and white blood cell count just to check everything had gone back to normal (and then bollocked me for not having the follow up test like I was supposed to).

I told her I was completely fed up of feeling so shit - all the doctors seemed to come up were tests and no-one seemed able to tell me what might be wrong and why I was feeling so sick and getting so many migraines/covered in nasty rashes. She then said I sounded depressed - at which point I nearly whacked her - I nearly burst into tears, NOT BECAUSE I'M BLOODY DEPRESSED but because no-one seems to be listening to me! AARRGGHH

Anyway, have left with a prescription for Imigran (migraine pill) and she then told me she's leaving the practice next week (great!) so when I go back after my blood test I get to see yet another doctor and go through the whole thing again ggrrrr

mjp185 Sat 29-Apr-06 22:14:58

Hi foxinsocks,
Reading this thread, I find it is a parallel to my mums life over the past 2 yrs.

I don't have FM but my mum does, accompanied with osteoarthritis and polymialgia also

She was diagnosed by pressure point and has been on varying doses of prednisalone, Tylex(painkillers) and Fluoxetine(prazac!)

She was signed off work sept 2005 and after 6 months she was sacked (after 25yrs service!)

Now going through Disability discriminatio and indusrial tribunal, which is not helping her illness.

I have cried buckets watching her bad days, and hope for the good days... I just wish I had the old mum back. The prozac doesn't cure but it sure has made a difference with mums ability to cope with the pain/migraines

Mum has a wonderful rhuematologist which I think makes all the difference, if you can find an empathetic GP I am sure you will be able to get a diagnosis and the help you so clearly need

My dad found it difficult though as he couln't 'see' anything wrong with her....

Sorry for long post, hadn't realised how much I had written!

mjp185 Sat 29-Apr-06 22:16:13

please excuse the typos

foxinsocks Thu 18-May-06 15:07:16

thanks for that mjp

so tribpot, what's been happening with your dh?

I am not feeling bad at the moment. The migraine pills don't work properly - I can still feel the migraine is there but the pain isn't nearly as bad. The annoying thing is that I go to bed and when I wake up the next day, the migraine has come back with avengeance so I had to take 3 of the pills on 3 successive days so I would say that probably won't be considered a success.

On a positive note, I had a long chat with a GP friend who has told me that she thinks this is all to do with my hormones. I've been filling in a symptom diary and none of my symptoms appear until ovulation and in fact, the proper migraines definitely coincide with my period (and only go away once my period has stopped). There is a condition called 'Auto-immune progesterone dermatitis' - it's rare but possible I suppose. I've had another blood test (haven't got the results) but I have to go back to discuss whether the migraine stuff is working so I think I'm going to ask for a referral to a gynae first of all. I still don't know about the fibro - my symptoms fit but I must say, I don't have the unrelenting pain that all of you (or your family members) have.

tribpot Thu 18-May-06 17:27:53

fox, glad to hear you've managed to have a chat with a friendly GP, even if it was a friend who is a GP! I regularly bend the ears of my medical friends but they are specialists in: respiratory medicine, eye surgery, dental surgery and paediatric endocrinology so tragically none of them have been able to be much practical use at all (except the paediatrician told me to put ds on Infant Gaviscon when he was tiny).

Interesting that there seems to be a link with hormones, definitely worth following that up although I suppose there's a risk you'll get some git of a doctor telling you it's just bad period symptoms and you'll have to lump it. I guess going on the pill wouldn't be a good idea at the moment (a) cos it will mask symptoms and (b) cos your symptoms have been triggered by a Mirena coil in the first place?

For the migraines, have you tried acupuncture? Given the cost, this might be more feasible now you can predict a bit better when you're going to have them. I wonder if anything else might help just before period time, like cutting out dairy or wheat or something, even if normally you don't have a reaction to them?

Things with my dh are even more depressing than usual, in fact I was too upset to go into work today as a result of a lousy appointment with the clinical psychologist yesterday.

It seems like the pain team are basically just washing their hands of the whole thing, saying he has to come off all of his meds, and so he has to find other ways of coping with the pain. We spent an hour with the psychologist going through his history (for the 902nd time) and her asking a few random questions like how do I cope with things? (does it matter, since I have no option?) and had he listened to the CD he'd been sent on coping with chronic pain (amazed I didn't respond "have you listened to the CD you've been sent on teaching your grandmother to suck eggs?").

Anyway, rather than seeing a need for him to have regular psychotherapy as I was hoping, it looks as if the grand scheme is that we go back once more in two weeks and discuss some coping strategies, and that's it.

Dh is absolutely shattered physically from the effort of getting to the hospital yesterday, and I am absolutely shattered emotionally by the complete lack of understanding or meaningful support we've been offered. I can't even see any point going back in a fortnight, but I guess we will, because all we do nowadays is jump through hoops that different doctors set up for us.

The psychologist actually asked me if we'd found the session useful - I was so shocked I just said "er, were we meant to?" and then out of politeness added I'd thought it was more for her benefit to find out about dh and his daily routine and history.

Half of me thinks I might as well just tell the pain team to call it quits now - there are lots of people out there who need their services, and since they clearly can't help dh at all, what's the point for any of us in carrying on this rigmarole? And a lot of me thinks that after two years and literally thousands of pounds pursuing conventional medicine, we're now looking at x year and x thousands of pounds pursuing complementary medicine. Now that we have ds I can't go back to the sort of contracting work I used to do that made x thousands of pounds a feasible amount to spend on something, so the whole thing is just one giant mess with no end in sight.

Sorry to rant, I'm just having one of those days. I just want to give up.

jabberwocky Thu 18-May-06 17:33:07

My secretary had this. Have you tried yoga? I noticed that breathing exercises help you and yoga focuses a lot on the breath as well. Have heard others say it helped them.

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