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Does this sound like fibromyalgia?

(24 Posts)
cocolepew Mon 29-Jul-13 18:23:56

I went to the Dr a few weeks ago convinced I had an under active thyroid. After blood tests she did it wasn't and asked to see me again. I took a list of symptons and she thinks it could be fibromyalgia.

I have had hair loss, deep pain in my muscles, muscle spasms in neck and upper back, fatigue, skin feels like it is sun burnt.

Last couple weeks I felt much better and started to do a bit of exercise, just swimming and walking.

But today I have barely got off the sofa. I'm so tired and have pains in my muscles and some joints are swollen as well as a sore head and blurry eyesight. I've been falling sleep all day, I slept well last night but woke up very tired and stiff.

TIAsmile

newestbridearound Mon 29-Jul-13 20:31:39

That could easily be fibromyalgia as the amount of symptoms the condition can present is vast. It could also be the beginnings of M.E/CFS as the two are incredibly similar- some sufferers of one also have the other, sadly I am one of them!
Sorry you are feeling so rubbish from it all. How long have you been feeling ill? Rest is often the key to managing these sort of illnesses, making sure you take plenty of breaks and listening to your body is essential.

newestbridearound Mon 29-Jul-13 20:33:36

www.fibromyalgia-associationuk.org/information-packs-mainmenu-58/booklet-mainmenu-135/490-patient-booklet

I'm sure you've already done lots of research, but this site is quite good for explaining fibro.

cocolepew Mon 29-Jul-13 20:42:19

Thanks newest, it's hard to say how long I've felt ill. I had a hysterectomy last August but had been illl since the November before. I'm still having some gynae/HRT issues so I think I was blaming that for a while.

It's been a couple of months I've felt like this I think (!), I was convinced it was my thyroid and wasn't too convinced about it being fibro type illness tbh.

It was just today when I felt rotten again I thought it could be a flare up.
My GP had sent a referral for me to see a rheumatologist but that could take months.

tribpot Mon 29-Jul-13 20:55:53

It sounds possible but I wouldn't let the GP diagnose you just yet. Fibro is a condition that basically lets the health service off the hook as there is no real treatment (and certainly no cure). I would want a more exhaustive set of tests doing first, and a referral to a rheumatologist for preference.

newestbridearound Mon 29-Jul-13 21:11:04

Definitely see if there are any more tests that can be done first as tribpot says. To officially diagnose M.E you have to have had fatigue and various other symptoms for a period of at least 6 months, and for fibro I think it's similar. Hopefully the rheumatologist will provide some help, I hope you don't have to wait too long.
Sadly these sort of chronic illnesses are basically just umbrella terms for numerous symptoms, when the medical profession don't truly understand what is going on. As a result treatment is sketchy at best. I really hope that you can get a more conclusive idea of what is wrong soon.

cocolepew Mon 29-Jul-13 21:15:19

Thanks for your replies. I very rarely go to the Dr I prefer a bit of woo myself grin. Unfortunately my woo lady is away ATM.

I was counting up and I know 8 women with fibro, that seems high to me. 3 are in my street and the rest at work.

RubySparks Tue 30-Jul-13 03:06:40

I have similar symptoms but also on HRT and thyroxine for under active thyroid! It is auto immune and I believe this sometimes means worse symptoms even though blood results are 'normal'.

RubySparks Tue 30-Jul-13 03:07:24

You could ask for blood test for antibodies rather than tsh test normally used to check thyroid.

CFSKate Tue 30-Jul-13 17:20:27
RockinD Wed 31-Jul-13 09:19:20

Chances are this is adrenal/thyroid issues caused by the fact that you have been ill and the shock to your system of major surgery. There are certainly some classic thyroid symptoms in there and a full thryoid screen, including antibodies, would be a jolly good idea.

In the meantime, support your adrenals as best you can. Be good to yourself, early nights and good food, and plenty of vitamin C.

Fibromyalgia is a symptom, not a diagnosis.

gallifrey Wed 31-Jul-13 10:46:57

Of course fibromyalgia is a diagnosis, I have been diagnosed with it!

RockinD Wed 31-Jul-13 19:45:57

Undoubtedly by a doctor who has not bothered to look for the underlying cause of your symptoms or refer you appropriately.

Anything you read about fibromyalgia will refer to it often coming on after an illness, an accident or surgery (as with OP), but only rarely do doctors make the connection between these incidents and damage to the adrenals, resulting in fibromyalgia, which after all only means that your muscles hurt.

If you're on the scrapheap with a fibro diagnosis, and probably taking a cocktail of drugs which work against each other and further suppress your adrenal function, then unless you're happy to stay as you are, you need to start reading, learning, testing and working towards being very much better than you are at the moment.

I speak as someone who was initially diagnosed with CFS and is now well.

gallifrey Wed 31-Jul-13 21:28:05

Well I don't believe I have it but that's the diagnosis from a rheumatologist and I've been fobbed off so many times by my doctor I think you are probably right.
I was getting symptoms after I fractured my leg in 2005 but was admitted to hospital with guillian barre syndrome in 2010 and I was told I had fibromyalgia a year after that.

smokinaces Wed 31-Jul-13 21:34:32

I have fibro, but alongside hypermobility syndrome and pcos. They are all syndromes and a collection of illnesses. Basically the fibro is a version of cfs - one that affects the joints more my rheumy told me. I was diagnosed many years ago. I was diagnosed after tests for thyroid and lupus etc. Though I am thinking of getting my thyroid rechecked post kids, as there is family history.

cocolepew Wed 31-Jul-13 23:49:03

I was told by my alternative dr(!), after going to see her after my operation that I had adrenal fatigue. If she has been around I would have went to her but unfortunately she's not available until September. The adrenal glands support the thyroid so this could be causing the thyroid type symptoms. I'm not sure if adrenal fatigue is seemnas a 'proper' diagnosis by GP. I suspect not.

I know someone who was diagnosed with CFS seven years ago but it turns out it's been MS all along.

cocolepew Mon 05-Aug-13 15:57:00

The alternative practitioner I go to is available again, I'm just waiting for an appointment.
I'll be interested in what she says. I know going this route isn't for everyone but she is very good (has phd's coming out her ears). I've been going to her since i was 17 and I'm 44 now!

cocolepew Wed 07-Aug-13 11:22:12

Hi I already posted a hair loss thread but thought i would put it here too.

I was a the oestopath this morning who told me I had muscle and ligament problems through lack of magnesium. If there isn't enough magnesium you get a 'ragdoll' effect, this means you are more likely to end up with joint and muscle pain. I had put out a lot of my back and pelvis and this was causing the aches and
spasms.

I have been realined and have to take 400mg of magnesium for 6 werks and then cut it down to 200mg daily if I wish.

Maybe this wil help someone else smile

cocolepew Wed 07-Aug-13 11:23:41

RockinD my adrenals were a problem as well, causing my thyroid to slow down.

Alwayscheerful Wed 07-Aug-13 11:28:29

Out of interest, have any of your doctors checked for Vitamin D deficiency?

skyblue11 Wed 07-Aug-13 16:16:57

Those symptoms sound like me and I'm Hypothyroid, get the levels in your bloods you could be just out of the range they have. Guess they are all similar and linked as they are all autoimmune conditions...

Groovee Wed 07-Aug-13 16:26:00

I have fibro which was diagnosed after around 10 years of not knowing what is wrong. I have horrendous days and then I can have great days. Always noticed how well I was on holiday in warmer places.

There is a thumb test which diagnoses you. I think they say 17. I hate people touching me. Some physio's have caused me to pass out when touching the trigger points.

Rockin' I'm finding your dismissal of fibro as a symptom quite rude. It's certainly not a symptom.

Definitely seen a difference in how I am feeling after 6 weeks of sunshine. Now to talk dh into a holiday in Florida every year.

cocolepew Wed 07-Aug-13 16:45:09

Ask your Dr for Florida on prescription Groovee grin

Groovee Wed 07-Aug-13 16:47:46

Haha Cocolepew can you imagine the response to that "Lazy arsed mother gets florida holiday on prescription!" grin My dad said "you've not got that, you're just a lazy bastard!" sad

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