Tried everything so I'm turning to my fellow Fibro sufferers for advice

[Atlas]

Hi all,

I'm new here but definitely not new to Fibro. I was diagnosed about 16 years ago by my rheumatologist in the US but since moving back to Australia, I find it harder to be taken seriously by doctors. My latest 'flare up' was caused by having the Astra Zeneca vaccine 2 years ago (I had no choice of vaccines as I am over 50 & therefore am expendable apparently). No, I'm not an anti-vaxxer but between getting the vaccine & then Covid, my Fibro pain is now intolerable. I've spent a fortune on microbiome treatment (No, I didn't get a poo transplant), have tried CBD oil, regular pain killers, anti-inflammatories, depressions medication, diet restrictions, supplements, pre & pro-biotics etc. I'm about to go to a detox retreat in Thailand where I've been before with success for weight loss, but I'm hoping that not eating any solid foods for 8 days plus lots of exercise & warm weather might actually help me. Not sure why I am posting all of this, but I guess I was after some feedback from people who may have had vaccine or Covid-related flare ups. The worst part for me is I now have extreme pain in my hands which makes my job as a writer very difficult. I've had xrays & scans & neurophysiological tests - been tested for arthritis (no), Carpel Tunnel (no) and RSI (no). I've never had Fibro in my hands before & its horrible. Does anyone else have that? Thanks in advance for any suggestions, advice, feedback or general venting........

 

[JayCS]

Hi Atlas, and welcome!
Another member from down under, always fun to hear about your side of the world.

after some feedback from people who may have had vaccine or Covid-related flare ups.

Well that is sort of me and sort of isn't. The 3 CoV-jabs triggered MCAS, a mast cell immune system condition. Extreme "flares" for many months, finally ending in continually less maximum energy / quicker exhaustibility. Immediately and continually keeping me home from work. So not just "flares". And not necessarily fibro, my extreme exhaustibility issue seems either separate or my kind of fibro.

The worst part for me is I now have extreme pain in my hands which makes my job as a writer very difficult. ... I've never had Fibro in my hands before & its horrible.

In the fibro/rheum clinic they had exercises for fibro hand pain. I'd never had it, so thought I was going to waste my time. Then I realized it's also about the wrists and the lower arm. So the hand exercises/stretches were good at the time, altho I didn't keep at it for long. In the meantime I've found that stretches, pressing pain points in certain ways and massager are the best ways for minimizing all local pains. Mostly they are tendinitis, whether they seem to be "joint" or "bone". I don't keep at it, but I have a zero tolerance policy: Usually, if I have even a suspicion anything may be coming up, I start treating it before it gets chronic again. I know what to do if I forget that, but instead of taking a few days it can take a few weeks to get it under control again, and that then also adds the risk of further local pains.

 

[Atlas]

Thanks for your feedback. I wish I had access to a fibro/rheum clinic. I might ask around & see if there is anything like that in Melbourne so I can learn about those exercises.

 

[JayCS]

I wish I had access to a fibro/rheum clinic. I might ask around & see if there is anything like that in Melbourne so I can learn about those exercises.

If there isn't, or meanwhile, you could try exercises from youtube (or books).

Actually I've found it's better to become independent of such resources, and I was that pretty much already, went there for strategical reasons. Harmed a lot, learned a little.

These exercises were so specific that they were hard to find on the web, they had I think been developed directly at that clinic.
One was moving your fist in the form of an 8, taking a pencil or similar can help. Another was laying your hand on a table and alternating between cupped and straight/stretched. I wrote them all down somewhere on my blog, if you're keen.

What I do now for any local pain is search for stretches, points to press etc. on youtube, so I can see exactly how to do them (e.g. wrist treatments, hand therapy or more specifically wrist tendonitis stretches).

 

[sweetkamie20]

Hello and welcome to the forum

Given that the vax exacerbated symptoms (you are definitely not the first FM bearer noticing that) a vax detox regimen might turn back the clock and may even get you better than you were before.

There are a few good vax detox regimens and they generally recommend the same vitamins and minerals.

Personally, I make use of this website F L C C C. Net (remove all of the spaces). It was started by doctors and nurses. They have developed COV prevention and treatment protocols as well as vax injury ones. The protocols are supported by a ton of research which you can read on their site. Good news is fasting is one of the recommendations for vax detox.

I use their website first for everything vax related. One of their articles I read quoted around 1,000 publications and they make zero money on what they do so they are as close to unbiased as I’ve found…