Confused/worried/frustrated. - Fibromyalgia Acti...

Fibromyalgia Action UK

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Confused/worried/frustrated.

TurboBonkers profile image
8 Replies

Hello all.

I’ve been having symptoms for over two years now, but seeking treatment for the last 15 or so months after things got worse/changed.

I’ve been tested for vitamin deficiencies, under-active thyroid, anemia, slipped or bulging disc and inflammation and everything has come back as normal so far. I feel far from normal. It’s so frustrating.

My symptoms are fatigue, muscles tightness and spasms in back/neck/shoulders. Stiffness and pain in hips and knees. Numbness and pins and needles in feet and legs and now my arms but less frequently so. Eye pain, like a dull but burning ache in both eyes. The muscles in my face around my right eyebrow keeps twitching. This is the newest thing to happen.

The muscles all over my body twitch and pop almost like a baby kicking, a soft enough sensation but it’s very distracting and I often feel my skin is charged due to the tingling. I’m very sensitive to touch.

I’m frustrated because my gp has said that nothing is wrong with me except soft tissue aches and that I should go running to clear out toxins. Thankfully my nurse practitioner and physiotherapist have taken my pain seriously and referred me for tests. I’m seeing neurology on the 30th January but I don’t know what to expect.

I’m not sure what my point is but I felt like getting this all off my chest. Thank you for reading.

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TurboBonkers profile image
TurboBonkers
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8 Replies
YASMINTINA profile image
YASMINTINAFMA UK Volunteer

healthunlocked.com/fibromya..., hi there I am glad your nurse practitioner /physiotherapist has taking you seriously, some doctors unfortunately can still be dismissive about fibromyalgia which still surprises me , hope the appointments come soon and some answers are found, I would seek out another gp at your surgery. ive posted a link if you would like to lock your posts that way only our community can see and generates more privacy for you x

TurboBonkers profile image
TurboBonkers in reply toYASMINTINA

Thank you for this, I didn’t realise there was this distinction!

I would prefer it to be private.

I do intend to seek another gp but, stupidly, I have felt awkward doing so, as I’m always automatically assigned to this one. I felt I would wait for some answers before doing so now that I have my nurse to see in the mean time if I am concerned.

Thanks again, take care. X

YASMINTINA profile image
YASMINTINAFMA UK Volunteer in reply toTurboBonkers

No worries we just advice members if they would like to lock , I understand waiting till you get some answers, I was with a gp when he left I got too see another brilliant one at the same surgery he diagnosed me with fibro/cfs where the other one just didn’t point me in any direction ( this went on a few years and I had depression at times) , I knew things were far from right and was just palmed off with tabs and no checks , now family/friends are so much more in tune and getting the diagnosis everything fell into place , I’m so much more comfortable about my life now, wishing you the best, the forum has been a great place to come chat with others x

TurboBonkers profile image
TurboBonkers in reply toYASMINTINA

Thank you so much for your reply. I know some of what youve been through. My doctor mentioned in my post did also try to give me some gabapentin, but as this came following being told there was nothin wrong with me I felt reluctant to take them.

I’m so pleased you have people who understand around you. That must be a massive support. I expect that this group will be the best support though, as they are gong through the same things.

Xx

The Neuro dept.will carry out Nerve conduction studies its of pins stuck in you but quite painless,you could seek acupuncture if you are not diagnosed with fibromyalgia,or hydrotherapy.

Debbs73 profile image
Debbs73

Hiya. I think I'd ask to see a different Dr/ consultant for a second opinion. It's your body and you know if something's not right. It took me over 15yrs to finally get a diagnoses, after pills, creams, injections and surgery they finally tell me what my chronic fatigue and chronic pain in numerous parts of my body is.

TurboBonkers profile image
TurboBonkers in reply toDebbs73

15 years? That’s such a long time! What surgery did you have?

I will see another doctor if nothing happens following on from seeing neurology. I knew this nurse practitioner would be helpful as she’s been so lovely in the past. Hopefully the neurology dept will go through the results with me rather than a gp since it was orthopaedic triage who referred me there?

I hope you are doing ok at the moment. Thank you for the reply.

Xxx

Debbs73 profile image
Debbs73 in reply toTurboBonkers

Hiya. I know 15yrs is a long time. I've had arthroscopic one on the left knee and 3 oon the right, I've had knee scrapes, injections into it, even had my leg broken realigned and bolted together. Ended up having bolt removed as it was protruding through the skin. I've had 2 ops on my right shoulder, injections into it xrays ,mri . Told by all surgeons that can't do anymore surgery as will make it worse. Been under pain clinic as all can do now is manage the pain. Also can no longer kneel on my right knee due to having hypersensitivity to it and my shoulder. I also have hematomacrosis which doesn't help. Yeah please do get a2nd opinion if your not happy with what you've been told. I'm now taking a cocktail of drugs to try and help with my pain. Please let me know how you get on. 😀

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