So they think I have fibromyalgia..................................

[worrybum]

any fellow MNetters have this condition? I know very little about it at the moment. I saw a rheumatologist yesterday after my new gp referred me. She is pretty much convinced I have it and has started me on painkillers and I have a follow up appointment in 3 months time.

I have suffered from widespread pain for several years which has been worse over the last year. The pains are many and different and wax and wane if that makes sense. I don't always have them all at the same time time but am pretty much always in pain. Some types of pain will hang around for only hours or days, other times months. The pain includes headaches, nerve pain in my left ear and face, neck and upper back pain, lower back, pelvis, hip and buttock pain and pain in my legs. These mostly aching pains but I also get stinging, burning pain in my legs. I also get a stitch like pain in my ribs (not brought on through exercise) which makes it difficult and painful to breath.

In addition to the pain I also get horrible tingling feelings in my hands, I suffer from irritable bowel syndrome and I have had four successive miscarriages. As you can imagine i have been feeling pretty crap for a long time and even gave up my job last year to take a well needed break because I felt so ill. I feel a little relieved at the moment though because at long last I am being taken seriously and not being simply told I have anxiety or depression. Admittedly I have at times felt very anxious and depressed but only because of my health.

So to those of you who have this condition please tell me if my symptoms are similar to yours and let me hear any positive stories you have.

Thanks.

sorry, should also have added that i am always tired

I haven't, but my mum has. All of yours sounds very similar (including ibs).

She found a good website - I'll go hunt out the link now.

I remember her saying that she used to get really painful heels too and she realised that is another fibro thing

here

thanks flame, i had really bad burning in my heel a couple of months ago which was there for about 3 weeks but have only had that the once.

OMG have just read that list of 50 symptoms on that link..............I have loads more! Heartburn, irritable bladder, skin conditions, I also get recurrent UTIs and thrush so must be prone to infection. Thanks I am going to read on.

I have it. Your symptoms sound very similar to some of mine. I reckon I am in pain about 80-90% of the time. Some flare ups can last an hour, some a month. I get mild IBS, I get facial pain and have started getting headaches. I get tingling and pins and needles, some times my fingers go completely numb.
It can - and does in my case - cause memory problems, I can forget things easily, alos it affects how I see things, so I can type something down and it looks right, but its not. or I'll be speaking to someone and forget mid word what I am saying.
I worked succesfully as a childmidner with it, and currently working (but suffering a lot) part time. I find that alternating heat and ice on really bad flare up can help, especially on shoulders and legs

this is a good website

There are a few so hopefully they will find you

My sister suffers from it. It is wonderful that you have a gp who has listened and referred you and that you have been able to get a diagnosis, they can be so hard to get. Sister has IBS too, often go together. One of the things with fibro is that you become immune to painkillers so you might find yourself having to fiddle with medication and change things around a fair bit. Sister has found that things like reflexology offer relief and also has hydrotherapy I think.

It has made life difficult for her but one thing I can say with certainty is that since she got a job (was unemployed for a long time) she has been so much better, I think because it gives her a focus other than the pain (she has also struggled with depression which hasn't helped) She has to take a day off sometimes if she over does it and has a flare up, she also has a heat pad for her chair at work etc to help but employers are good about it and she manages well. Obviously she can't cope with a night of clubbing and moshing like she used to as a teen but she still goes out a fair bit to pubs, cinema etc. Normal life while knowing her limits really.

Sure someone will be along with first hand experience but hope that helps some.

I type too slowly

fatigue can also be a symptom. There ar esome days where I don't sit down because I will fall asleep. I also find that my spelling, typing, general memory etc are far worse when i am tired, and I get the really bad headaches and eye problems then as well

thanks for your replies

saltire - my dh gets really frustrated with me sometimes. I'll ask him something and he'll answer me and then I'll ask him the same question two minutes later only for him to tell me I've just asked him that and he's already answered me

Poor you. Have you had your thyroid checked? Often the symptoms are interlinked and many benefit from taking thyroxine/T3. Look up thyroiduk.org. for more info and find out more info regarding help for yourself. Hope you feel better soon. Personally I think you need more than just painkillers as that might help with the pain but none of your other problems. xx

mg - hav had thyroid checked and lots of other blood tests (for arthritic conditions I think) that all came back clear. I'm thinking of considering some alternative therapies, maybe massage or accupuncture in addition to the prescribed painkillers

De John Lowe in the USA has done lots of research on this, look him up. Dr Barry Durrant Peatfield is also worth researching and says many have normal thyroid results on blood tests but cannot convert T4-T3. I'd try to get an appt with him if possible. Got to pick up dd will pop back later with more info if I may. x

mg thanks for that, any other info more than welcome particularly given that I have had recurrent miscarriages and I know that these could be linked to thyroid problems.

Hello, sorry I couldn't get back yesterday. Could you ask your GP that in spite of normal blood tests you also have many hypothyroid symptoms and could he put you on thyroxine/T3 to see if it alleviates the fatigue etc. Another thought is to see a homeopath to see if your body can be put into balance. I saw one in Surrey after repeated miscarriages and 6 months later fell pregnant with dd now 10. I would go down every route possible to try and get your life back, use both the conventional system and alternative.You have nothing to lose and everything to gain. x

Shoshe has Fibromyalgia as well and she tried acupuncture. I haven't yet, but she said it really helped her, and specifically for the pain in her shoulder.
Have you also been tested for other things to rule them out? i got tested fro Lyme's disease, and for Lupus. My cousin also has it , but they think hers is now somehting to do with wheat, as she also gets a lot of thrush, and very bloated.

Hi as Saltire said I have had acupuncture for my shoulder as it was really bad, and it really was good.

i have Lupus as well as Fibromyalgia, the Lupus triggered the Fibro

I have just come out of a really bad sleeping phase was only manageing about 2/3 hours a night for about 4 months, waking in pain and then not being able to sleep again.

Dr couldnt give me anymore painkillers but sat down and moved around how I am taking them, I take a slow release painkiller (Lodine)which I was taking in the morning, but it would wear off by 2 in the morning, I now take it about 6 at night, and it has really helped. (if I have pain in the early afternoon, I take Codeine, topped up with paracetamol if needed)

It has really helped and keeps the pain under control, in fact I didin't realise how much till I had a Sickness bug recently and couldn't keep my meds down, I was in agony!.

Think keeping a postive mind is the best thing, I still work a 60 hour week as a Childminder, which is ajob, thet suits my condition perfectly, as I can plan my day for myself, sit when I need to, sort of thing.

The worst thing I find is the brain fog, the scrabling for words, forgetting what you were doing, it drives me mad!

do any of you have eye symptoms?

Only if I try and drink. two mouthfuls of wine and it feels like a needle has been stuck in my left eye!

I do have really bad headaches, and I am having acupuncture in the back of my neck and temples at the moment to help it.

like many of teh others I haad reacurring m/cs, 13 in all, back in the 80's, and early 90's. I was tested for Lupus then but told I didnt have it, my now DR thinks I probably did.

noddy - I ahve started getting eye problems. For a while now I have been getting pain in my head and down one side of my face. I then started getting the visual disturbances which usually accompany a migraine, but with out eh migraine, just zig zag lines and blind spots. I had a blind spot all day yesterday and a really bad headache. I ahve also in the past 7/10 days been getting migraines. The face pain is really bad though

saltire - my face pain starts in my left ear but my ear is fine, no infection or anything. The pain travels through my face and jaw. Feels like I'm being stabbed with a red hot poker ITKWIM.

Shoshe - i am having a lot of pain in my shoulders at the moment, particularly the right shoulder and also in my right upper back. pain seems to travel to my neck and also cause headaches and pain behind my eye?!?!?!? Coming back to your recurrent miscarriages - do you know of any expert that believes there is a link. have been searching on net and can't find anything specific. Did you have any successful pregnancies after your symptoms started. i have one dd aged 8 but had her before all of my problems began. Desperately want another dc

No WB, I had DS1 but he was 6 weeks early, has two 6 week m/c I then 15 months later. (18 months between the boys) 5 more m/cs in two years

I then divorced and remarried 5 years later, 4 more m/cs and then had difficulty conciving at all as tubes blocked.

I then had IVF (paid for privately) I had DD (by this time DS1 was 11) she was 12 weeks early and lived 37 hours.

I then divorced again.

DS1 made me a grandmother 6 years later, and although I was with DH by then , we decided that enough was enough. (we also have had DGD living with us most of her life.)

But please remember WB things have come along way since 1990, a lot more is known to help you.

shoshe I had no idea you had had such a rough time of it with m/cs