Fibromyalgia - diagnosed

willa

izzy65 wrote: »

Hi having read back on your last post re symtoms it is possible that you may have SLE commonly known as Lupus, a difficult condition to diagnose but blood test help. This is in the same genre as Fibro so you would see a rheumatologist initially.What ever the results say do not give up I was diagnosed after 11 years of symtoms and I thought I was going loopy

Yes, I have thought that I might have that. I did ask to be tested for that at a recent hospital appt. I've not heard anything so assuming it's negative! Trying to get diagnoses for these kinds of things is notoriously difficult.
I have M.E. as well as fibro, but as they are not fully understood yet and share many symptoms they may be part of the same thing....
Then again, M.E. can manifest in a VERY similar way to MS.
Trying to get proper testing can be a nightmare.

willa

Bethankim, just read your symptom list. I have the pins and needles in hands and especially feet. I was told by the CFS specialist who diagnosed me with M.E. that this was a very common symptom of that condition.
A lot of what you say sounds like you could have M.E. to me.
But as I say, pins and needles, exhaustion, depression etc. could indicate some other neurological disease such as MS.
Just saying because as izzy says, people can go for years seeing doctors and being undiagnosed or misdiagnosed....

Bethankim

Hi guys thanks

I have no idea, but i do know my body isnt right, so for now will go with what my doc has said and see what the rhumatologist says presuming the blood tests come back clear.

I have known for a while i need to get me diet better, have PCOS and although not extreme IBS its sometimes not great..so think i will look at my areas of my life, mind body and spirit and give myself a chance of living as pain free as possible.

Im training to be a holistic therapist - we are now doing reflexology so will report back to see if it has any theraputic effect..we have to practise on each other..a nice perk

for me the knowing i havent gone totally mad and its not all in my head.

I dont know much about lupus etc, so im going to keep doing my diary - have made myself a check list grid so i can just tick it - that way i can build a picture up and see what if anything triggers the worst of it

Unity

A very useful book is http://www.amazon.co.uk/Fibromyalgia-Chronic-Myofascial-Pain-Syndrome/dp/1572242388/ref=sr_1_1?ie=UTF8&s=books&qid=1259059084&sr=1-1-spell

The MSE way would be to order from the library although it is a very good reference book and very informative.

There's also http://www.ukfibromyalgia.com/ for useful resources. I think I obtained some useful pamphlets and a symptoms diary from here - although it is so long ago I can't be certain .

I was dxd with fibro and CFS in 1994 - secondary to spinal problems. Fortunately I have now got an excellent GP, but at the time of my diagnosis by a professor in rheumatology, very few doctors believed in the existence of this problem. Unfortunately, despite recognition by the World Health Organisation - this view is often still held by a sizeable portion of the medical profession .

I have run the gamut of diagnoses even a positive for MS which was then discounted. I am now being tested for Lupus as my symptoms have got worse and now include facial blistering.

I wish I could say there was a miracle cure, or even a good way of coping with the recurring flares (I'm in the midst of one at present _pale_) but the only way I can cope is basically to look at it like a storm - batten down the hatches and wait it out :sad:.

Good luck with the blood tests Bethankim - and with finding a good rheumatologist.

Fantabulous

I was diagnosed with Fibromyalgia by my Rheumatologist yesterday.

I have RA and have a Rheumatologist so bypassed the GP and got an appointment directly with the hospital. Also have Hypermobility Syndrome

Right now the pain of Fibro is worse than the RA was without medication!

tattonlady

The pain clinic Doctor diagnosed fibromyalgia . It seemed to happen following a fall I had 18 months ago.At the present time I am in such a lot of pain and can barely walk.

jennihen

I was diagnosed with Lupus many years ago and had flare-ups and remissions.
More recently I started having a lot of muscular pain which my GP told me to make my Rheumy aware of. The rheumatologist diagnosed Fibro on the spot - no 18 point test or anything.
A lot of these conditions are linked and develop over time. I just hope that you get medications that work and if not, a Gp who will keep plugging away trying.
Whilst not curable, these illnesses can be managed, although it can take yime.
Best of luck
JH

Trialia

In my experience, M.E. and Fibro are almost identical in symptoms to a point... just one has more fatigue and immune dysfunction, and the other has more pain. My best friend has both.

As for who can diagnose... well, I saw a rheumatologist and he diagnosed me with hypermobility syndrome. Took a pain management specialist to diagnose fibromyalgia in addition to HMS.

Unity

jennihen wrote: »

I was diagnosed with Lupus many years ago and had flare-ups and remissions.
More recently I started having a lot of muscular pain which my GP told me to make my Rheumy aware of. The rheumatologist diagnosed Fibro on the spot - no 18 point test or anything.
A lot of these conditions are linked and develop over time. I just hope that you get medications that work and if not, a Gp who will keep plugging away trying.
Whilst not curable, these illnesses can be managed, although it can take yime.
Best of luck
JH

Jennihen - when you got your Lupus dx was it down to blood tests? Mine have proved inconclusive, so now I am waiting for another appointment to see a dermatologist to hopefully determine whether the rash is indicative of this. That will be when the admin at my surgery get 'a round tuit' as it's been three weeks and the hospital hasn't received the referral letter yet :rolleyes:. I know because I rang and checked and they asked if the surgery could fax the details over . I have a good GP but the admin staff are a bit hit and miss. It's got to the extent where I don't phone the surgery, I fax everything, even my repeat prescriptions, so that I have a record - but even that is only any good if they remember to turn the fax on :rolleyes2.

I've managed to struggle on regardless for the past 13 years or so and then a couple of years ago things started to deteriorate badly with sudden hearing loss, blood pressure that went from very low, to very high (requiring treatment) and hypothyroidism.

I've been housebound for the last twelve days due to overwhelming fatigue, swollen glands, sweating one minute, chills the next, as well as a massive increase in pain levels and more recently the right side of my face going numb including my ear (just like I've had local anaesthetic at the dentist). I've got a permanent headache, can't put my contacts in because of eye pain, I can't hear at all in my right ear even with the digital aid and the soft tissue in my feet is so painful - it hurts to stand upright. I have lumps all down my shin bones that hurt like hell and the previously dxd Raynaud's is more of a bother as well.

Since the docs reckon fibro is not degenerative, I have become "an interesting case" - a term which drives me mad :mad:. Tbh I am a bit sick of being a guinea pig, I'd like to be a hamster for a change, then I could run on the wheel :rotfl:. As if :rolleyes:.

Good luck to everyone in finding the treatment you need to help you cope.

:wave:

C_Mababejive

I've just checked out this condition and i think i have it too...
http://en.wikipedia.org/wiki/Fibromyalgia