Er. Hello

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Er. Hello

Postby Unicorn Breath » Wed May 18, 2016 4:28 pm

No idea why I haven't registered here years ago.. but!

I am currently GP diagnosed with FM, but seeing Rheum. in a months time. My back ground is I have been receiving treatment for "pain" for around 20 years now. In that time I've had many different diagnoses, and treatment methods, and have spent a fortune on non-NHS treatment too (£600 Botox injections anyone?!). I've seen different rheumatologists, and mainly ended up spending time under the pain clinic.

Pain levels seems to reduce after having my sons (now 7 and 5) but over the last 2 years pain levels have been slowly rebuilding till they're now as bad as they have ever been.

I tick all the boxes for fibromyalgia.. I have extreme wide spread pain, and the painful points on me can be painful enough to make me see stars (and I gave birth with just gas and air (a long, slow back to back labour too!).. so I'm no wuss.) And intense, intense fatigue (but show me a working Mum who isn't utterly exhausted!)

But saying that, I'm not 100% sure its FM. My Vitamin D levels are, generally, very low.. under 10 is quite normal for me. After 6 months of extreme effort to get levels up, I have got it to 21, which is the highest its been since it was first tested 7 years ago.
My calcium levels aren't low (smack bang in middle of range it should be), but when I used to take Calcichew (so Vit D with calcium) I had 3 attacks of kidney stones caused by too much calcium in system.

I'm concerned the Rheum will just write it off as FM when I see him, as its the simple answer for me. And that won't leave me with any more hope than I have now. I can't take gabapentin etc, and am currently on 1000mg naproxen (which doesn't touch the pain I am sure), and 60mg cocodamol at night to sleep twice a week (If I take it every night, it stops working by the third night)

I've probably ended up writing too much now.. but thanks for listening (reading. You know)
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Re: Er. Hello

Postby LindyM66 » Mon May 23, 2016 6:31 am

Hi U B,

I'm new here myself :-)

Recently diagnosed with FM by rheumatologist, although, like many, I've had the symptoms for a long, long time.
I currently take 100mgs of tramadol for pain relief - due to see GP next week- to discuss letter from rheumo, suggesting meds.
I too have wide spread pain. Back, hips, shoulders, upper arms, neck - but the worst is my butt cheeks and down hamstrings. Jeezo!
I find heat helps big time, so I use heat pads on my lower back, as my job involves alot of driving some days. Going to treat myself to one of those heated seats, that fit over the car seat!

Keep on, keeping on :-)
Lindy x
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Re: Er. Hello

Postby annamariehope » Mon May 30, 2016 9:08 am

Q

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Re: Er. Hello

Postby annamariehope » Mon May 30, 2016 9:11 am

Wow I'm new too and your stories are almost identical to me. My pain is worst all down my right side of body. Everything on that side is weaker my hand, wrist, fingers, elbow, shoulder, hip, knee, ankles and feet. You get the picture! But when flare ups happen in suffer mostly from  chronic fatigue, migraines and fibro fog. I diagnosed myself since my GP was not very forthcoming with help! I scoured of life easier research and realised once we ruled out coeliac that all my symptoms pointed to fibro.
Then I we think back to GP and she agreed and finally sent me to the rheumatologist. Now waiting for my letter and for new meds recommended.
I currently trying take x2 Naproxen no x2 cocodamol 4 time especially a day. Plus tram adolescents up to 4 time especially a day. I'm better at accepting the lifestyle adjustments now but hoping get to find directions advice here plus  make new friends who understand xx

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