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sallyj

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Hi Everyone.
I have recently been diagnosed with Fibromyalgia. All started last October when I had a bad fall. A week later I got a really bad infection in my leg (cellulitis) that required two rounds of strong antibiotics. As that was clearing I started to feel unbelievably tired and my arms felt like lead weights. Progressing on Both shoulders started to feel 'dislocated', I was getting pains like 'shin splints' in my legs. Progressed to both legs , both arms, buttocks etc. I had pins and needles, fizzy type sensations in legs arms, face. Foggy head. Dizzy feelings some days. Had numerous blood tests all coming back clear. My doctor sent a list of my symptoms and all my blood results to the Rheumatologist and he wrote back saying Fibromyalgia and to start me on Amitrptyline. Took my first one last night. I have seen that people have 'flares' which makes it sound as if sometimes you don't have this, but so far I literally haven't had one good day. If anything I seem to get new symptoms all the time.
 

JayCS

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I have recently been diagnosed with Fibromyalgia. All started last October when I had a bad fall. A week later I got a really bad infection in my leg (cellulitis) that required two rounds of strong antibiotics. As that was clearing I started to feel unbelievably tired and my arms felt like lead weights. Progressing on Both shoulders started to feel 'dislocated', I was getting pains like 'shin splints' in my legs. Progressed to both legs , both arms, buttocks etc. I had pins and needles, fizzy type sensations in legs arms, face. Foggy head. Dizzy feelings some days. Had numerous blood tests all coming back clear. My doctor sent a list of my symptoms and all my blood results to the Rheumatologist and he wrote back saying Fibromyalgia and to start me on Amitrptyline. Took my first one last night. I have seen that people have 'flares' which makes it sound as if sometimes you don't have this, but so far I literally haven't had one good day. If anything I seem to get new symptoms all the time.
Hi Sally, and welcome in! :👋
So you didn't have any abnormal pain or fatigue symptoms before the fall, infection and antibiotics? That's strange! 🧐
It's very rare for fibromyalgia to start this abruptly. Any normal docs wouldn't look at the fall, the infection or the antibiotics, so say: You have inexplicable fatigue, pain, brain fog & a few nerve symptoms, but nothing to see, no bloods, so you have fibromyalgia.
But since I have had very severe reactions to my CoV-jabs (including 4x the fatigue I had just from fibro) I have discovered that these are pointing to an immune system overreaction called MCAS.
So my first question'd be if you think it might be right to look at the antibiotics as a trigger for anything... whether MCAS or anything else.
And the second would be if you ever had any other overreactions, oversensitivities in the past. (It's very individual which antibiotics are tolerated in MCAS and which aren't.) In case you're thinking months is a long time for allergic type reactions: I'm needing months to recover and return to the fibro-state I was in before the jabs, if at all.

"Flares" doesn't necessarily mean we have good days in between, it just means that some triggers are making some symptoms even worse. Some of us do have "good" days, but I'd think only people with mild fibromyalgia have symptom-free days. It also becomes very relative what a bad or good day is. Even pre-jab I've been in a "full flare" for over 2 years, only being able to work a little bit after 10 months due to having found around 100 treatments which I need to apply, depending, and now again not able to work since December due to the MCAS-jab-"flare". So that'd be normal, but it doesn't mean it's going to keep increasing once you find 'your' treatments. You're definitely going to be needing -> ▶️ sunkacola's Big Advice Post to get started by adapting your actions and getting the hang of a new 'good' life.
 

sallyj

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Thank you for your reply. I haven't had any sensitivities to antibiotics in the past. The doctor said if she referred me to the rheumatologist the waiting would probably be around 12 months which is why she did it via letter. tbh I thought I had some kind of post viral thing as I felt very 'fluey' for a few weeks and then the pains in the legs and arms started. I suppose only time will tell. Rheumatology have asked for one more set of blood tests to rule out something else but said they are looking at Fibro as the cause. The only thing so far that has shown up is a mild lack of Vit D so I am taking a supplement. Am also taking magnesium.
 

sallyj

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Forgot to mention, I also have osteoarthritis in both knees which I have had for over ten years now. Don't know if that makes any difference to a diagnosis. We have a family history of arthritis. My son has Stills Disease.
 

JayCS

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some kind of post viral thing as I felt very 'fluey' for a few weeks and then the pains in the legs and arms started.
Well, it's not as if quite a few of us didn't feel like there was a fluey start to our fibro, in my case swine flu 8 years before and then a normal severe flu directly before. Just that it's rare that it's that abrupt.
The only thing so far that has shown up is a mild lack of Vit D so I am taking a supplement. Am also taking magnesium.
Yeah, we always point to that for a small influence, for some it helps a lot. To do D perfectly you'd go for a combination with vitamin K2 (-MK7). I take 20.000 IE once a week long-term, recommended by my GP but also by my bloods. And with magnesium it's good to see what form, e.g. malate and glycinate seem proven 2 of the best, with less gut problems. B12 would complete that trio of basics, best not the normal cyano-cobalamin form. I've done all three for years, even before I knew it really was fibro, but it never made any difference to my actual pain etc.
osteoarthritis in both knees which I have had for over ten years now. Don't know if that makes any difference to a diagnosis. We have a family history of arthritis. My son has Stills Disease
No, none of these make a difference....
 
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