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Fibromyalgia

11 replies

Robbo72 · 02/07/2021 09:58

I am going to explain my symptoms and can people tell me from their own experiences if they think I have fibromyalgia?

Before pain flare ups I get slightly cold - then I crash with intense fatigue - then I wake up with wide spread pain all over my body. The pain is significantly worse in my legs and travels from my waist downwards and right into my feet. I get hot burning feet - so bad it makes me cry. The pain is like intense growing pains I got as a kid - it feels like my blood vessels are too tight and going to explode . I get the same sensation in my hands and arms . I probably have around one week pain free a month. I’ve just quit a professional career after 29 years as it’s so bad . I’m 49 yr old female and specialist tell me it’s menopause related (PMDD) but I am not convinced and their treatments have not worked for me
Anyone with similar pain experiences who have been diagnosed with fibromyalgia ? X

OP posts:
SingingInTheShithouse · 02/07/2021 10:03

There is a similar thread by CrunchyKnot "Fibromyalgia Sufferers...

If you search that, you'll find a ton of good information & more details on my reply too,

But in short, a lot of that sounds like B12 deficiency. My feet are burning right now as I am overdue my B12 injection...I was also diagnosed as Primary FM...when it wasn't

Sweetmayday · 02/07/2021 10:30

This reply has been deleted

Message withdrawn at poster's request.

Sweetmayday · 02/07/2021 10:36

Yours to me sounds like fibro, not that having a diagnosis is much help but at least it gives how you are feeling a name. I would keep a diary of symptoms and push to see a rheumatologist.

Interested in this thread?

Then you might like threads about these subjects:

Robbo72 · 02/07/2021 11:03

Thank you ladies - I will look at the crunchyknot thread and I will also look at b12 supplements .(my local beauty salon does them ) My recent bloods did not highlight this as being low but my white blood cell count was slightly low but nothing to be concerned about they said.
I’m at docs next week to push to see rheumatologist . Does make you wonder if perimenopause make fibro worse. I do not believe these symptoms are purely menopause as they are truly savage !
xx

OP posts:
SingingInTheShithouse · 02/07/2021 11:12

@Robbo72

Don't get B12 supplements until tested. They can skew blood results & probably won't help

Unless you are vegan, B12 deficiency is due to an inability to process it, not how much you eat & will need injections. Supplements just mask a deficiency by raising blood levels of inactive B12. You need active B12 to heal

SingingInTheShithouse · 02/07/2021 11:15

This & the linked Facebook group are the best for all correct things B12 in one place & was a godsend to me when fighting for correct diagnosis & treatment for me & DD. As you can see, fibro is on the list of misdiagnosis...

www.b12deficiency.info/misdiagnosis/

Sweetmayday · 02/07/2021 11:49

Also vitamin d deficiency can cause similar symptoms.

SingingInTheShithouse · 02/07/2021 11:58

Totally Agree @Sweetmayday
& it can be multiple deficiencies due to genetics or processing problems, even gastric issues

In my case & DDs, it was D, B12, A, Zinc, Iron, B6, B1 & Folate ..(We need folate as genetics means we can't easily convert folic acid to useable Folate)

SingingInTheShithouse · 02/07/2021 11:59

& I should have added! We eat a very healthy non processed pescatarian diet, but still not enough to protect us from deficiencies

Grainjar · 02/07/2021 22:03

Yes. Burning pain in legs. Pain in arms, hands, feet but can be hips, neck, shoulders, back too. Can also get chest pain, like someone has put a tight band round your ribs or stood on your chest. Temperature control goes weird. But a distinguishing thing is stiffness if you haven't moved for a while. Chronic fatigue. Waking up exhausted. Not geing able to get to sleep all night. And a weird kind of internal juddering. I'd recommend watching on YouTube Dr Martin Rutherford's film, the one that's 1 hour 49 long "Fibromyalgia cutting through the bullshit" . If that rings true get a thyroid test on Medichecks and see if you have raised antibodies indicating Hashimotos. Then you'll know.

Summergold123 · 16/11/2021 21:31

Hello. Hope all is well?
Woundering if anybody can share their thoughts? B12, celiac, fibromyalgia and aklosing spondylitis has been mentioned. Had blood test was normal except vitamin B12, had a second blood test for B12 which was normal. So GP said B12 is not the issue. Had blood tests for celiac which was normal, so GP said celiac is not the issue. Currently waiting to see a rheumatology which could be May 2022. Had physio which was no help. Exercise is no help, resting is no help.
My worst symptom is lower back pain which spreads to my buttocks and thighs, pain in heels and feet (which I have seen biomechanics who diagnosed tendonopthy, Plantar fasciitis, tibialis anterior tendinopathy). The pain can be stiffness, aching, burning, tingling, sharp and stabbing pain. Sometimes I can't lie on my left side as after a while I get cramps in my bottock, thigh and legs. My legs get restless at night. My rib area/chest bone is sore to touch sometimes it's painful to ware a bra. I Often get pain in knees which often slightly swell, pain in elbows, arms, wrist, hips and what feels like stitches. Headaches (diagnosed with high blood pressure). On a good day the pain level is 5/10 and a bad day is 10/10. I'm on Zapain, tryed Dihydrocodine but accidentally overdosed while at work as took does to close together not realising as the pain got that bad as I work on my feet 8 hrs a night (currently on sick leave) after a few days of overdosing not realising I collapsed and suffering my 1st seizure, paramedics said I was unconscious for 30 minutes with enlarged pupils despite all there tests being normal. Being in A&E 4x blood test was normal, heart ultrasound was normal, chest xray was romal, ECG was normal, blood pressure was normal, head CT was normal and EEG was normal. So my GP won't give me Dihydrocodine again but gave me 10mg morphine patches which I couldn't stand the side effects so back on Zapain. My other symptoms include nightly muscle twitching, nightly pins and needles in hands and feet (which I bought wrist splints/supports which help), body stiffness, nausea, bloating, stomach cramps, constipation and dirohear, sensitive to light especially in the mornings. Sometimes sensitive to pain (simple touch or nock), fatigue (sometimes can spends days in bed getting up once for food, especially if been busy the previous day), poor concentration, thinking and remembering, loss of appetite sometimes can only eat 1 small meal a day despite maintaining weight, off balance and clumsy, eaither too hot or too cold, irritability, dizziness, allergys? Itchy nose, itchy forehead, watery eyes and small puss filled spots under bust.
Thank you for reading and sorry for the long post.

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