I've just joined the Fibro board, already a member of the fantastic Thyroid and B12 boards. I've been diagnosed with Fibro since 2008, also have joint hypermobility so really lucked out in the genetics health lottery.
I was doing really well until September 2021, when I had a whole raft of weird symptoms suddenly start and which have continued. Not sure if it's new problems or related to Fibro (isn't everything) . Looking forward to being part of this community. Hoping for tips and advice.
Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications
Not everything is related to fibro - so always worth getting new symptoms checked out
I know everything isn't related but in my experience, once you've got the Fibro label medics will probably try and blame whatever ails you on it. Its easy for them and gets you out of the consulting room. Sorry to be cynical but that's certainly what I've noticed. Either that or they blame anxiety/depression.
Not cynical because it does happen (though it shouldn't). I have found that if I start the conversation along the lines of. "I know it could be fibro, but thought it best to get checked just in case it's not..." I don't get fobbed off by doctors.
Just wanted to say, 'Hi' as someone else with joint hypermobility issues (the hypermobile type of Ehlers-Danlos Syndrome).
I've certainly had conversations with some Drs that were difficult (tho most, including GPs have been very supportive), so would agree in politely insisting your concerns are listened to, as everything isn't always related to fibro, hEDS, or any other disorder, so stand your ground!
What have been the symptoms you've experienced in the past 1+ year, as perhaps then others can advise?
I've had pins and needles in my hands and feet for years, I just accepted them as one of the joys of Fibro. I also have B12 jabs every 3 months and in 2020 got diagnosed with hypothyroidism. So the pins and needles could be any or all of the above.
Last autumn they spread to other places where I'd never had them before. My head, my stomach, my thighs, literally overnight I was getting these attacks of severe itching and burning. This coincided with another increase in my thyroid meds and as I have a history of anaphylaxis I assumed it was that.
Stopping my Levo didn't help, I came off it, went back on it. And I wondered, not for the first time if I had MS. So asked for a referral to the neurologist. Symptoms are very similar and I did wonder if the neurological symptoms I was getting which now included weak and shaky legs from time to time, were actually MS, not Fibro.
After Xmas I had a pretty good 4 months, then in April, I had been getting regular migraines. I've had them since adolescence but they were very few an far between. But I reckon I've had more migraines in the past 2 years than in the rest of my life. I had a migraine one day, and the next I started feeling really unbalanced and I've been like it ever since.
it's not vertigo as I'm not spinning, not nauseous and I've e got no hearing loss. Brain scan normal, no MS, nerve conduction studies are normal. I've been seen by neurologist and ENT and they've said it's a kind of chronic vestibular migraine, where you get dizziness and imbalance instead of the headache.
It's a weird, drunken, clumsy kind of sensation, worse when moving around. It's pretty much all the time and it feels like walking on marshmallows. Unfortunately I've not been able to tolerate any of the migraine preventatives like Propranolol or Nortriptyline. I'm very sensitive to medications. I'm now wondering if it's not the vestibular migraine at all and it's a worsening of Fibro.
My Neurologist also thinks it's a kind of functional balance problem, not a hardware issue with the brain, but the migraine I ad seems to have caused a software error in my brain where the communications to do with balance and spatial awareness have gone wrong. I'm now on the waiting list for a specialist neurology clinic who deal with functional disorders.
I have to say it's my most debilitating symptom to date. And I've become very anxious and depressed by it.
Thank you for your kind reply - as you say it's difficult to know which problem comes from any particular disorder. Just to say that difficulties with proprioception (knowing where your joints are in space) can be a feature of Ehlers-Danlos Syndrome. I say this from what I've read from the medical perspective, & also from my own personal experience..... I have to continually use visual clues as to where I'm walking, for example.
I also suffer from ataxia (a balance issue, so have difficulty in particular in walking over a slightly uneven surface), yes, a drunken walk, but this rather due to neurological problems that I also have due to Chiari 1 Malformation that can affect a few of us with EDS.
With EDS, either you can be very sensitive to some meds (I can't tolerate amitriptyline nor norttriptyline either, nor NSAIDs), or they just don't work at all.
I hope your neurology appointment goes well, but I'd consider mentioning the proprioception difficulties that can affect some of us with EDS or Hypermobility Spectrum Disorder, etc.
Please look through this link: gptoolkit.ehlers-danlos.org/
As far as I'm aware, your symptoms don't seem to be necessarily linked to fibro, so would suggest you look into EDS & possibly Chiari 1 Malformation.
Just mentioning 'in case,' as it seems somewhat contradictory to have regular migraines, yet have been told you get dizziness (which you haven't described) & imbalance (which you seem to have) instead of the 'headache!'
I think they've discounted myelopathy and Chiari because my brain MRI was normal. Thought Chiari would show on that.
The radiological definition of Chiari 1 Malformation is thought to be likely too restrictive (some people can have significantly more than 5mm of cerebellar tonsillar herniation, yet have no symptoms; others can have minimal tonsillar herniation & be symptomatic). So an MRI should be considered together with any relevant clinical findings.
I just wanted you to be aware that Chiari 1 Malformation can be associated with EDS (& other heritable connective tissue disorders) as I say, 'just in case,'
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