Covid & fibromyalgia

[Cora28]

Hi any idea to feel normal when you have fibromyalgia and COVID, it’s totally wiped me out

[Hazel_Angelstar Administrator FMA UK Staff]

Let me know if you find the answer... I had very mild covid symptoms, but the fatigue has totally floored me. Hugs xxx

[Cora28 in reply to Hazel_Angelstar]

I’ll love to find the answer, so far I don’t know if I should just sit and cry, I have 5 more days of isolation my body is aching I’m shaking, and that’s having two vaccinations also, x

[Hazel_Angelstar Administrator FMA UK Staff in reply to Cora28]

Thankfully my isolation ends today. Xxx

[Hidden in reply to Cora28]

Isolation is the best thing for you. Covid or not,just having a cold wipes you out when you have fibro. Vaccines aren't a miracle cure. They are to help where possible to prevent people from being hospitalised. Very much like the flu jab, it doesnt stop us getting the flu but it helps not turn it into something uglier. (I'm aware this isn't always case)

Take your meds for your fibro,keep hydrated etc.

Follow the instructions from your Dr regarding covid and wait it out.

Its the best you can hope for sadly.

[Sarahvit]

I just read an article on a research study that they are finding that fibro has a silver lining regarding COVID. People with fibromyalgia are at lower risk of have severe symptoms and death due to COVID. I was surprised to read this article. My husband tested positive with COVID on the 13th of December. I tested negative but a few days later I tested positive. Yes it flared up the fibro but COVID was mostly sinus related symptoms. No cough, no fever, no GI symptoms like loss of taste, nausea etc. I got sick on the 16 which was that Thursday. The 24 was the worse but by Christmas i felt my strength come back. I was feeling better. I was taking vitamin C 2x a day. My husband handled it well up until that following Friday night Saturday morning. His heath took a southward turn and was moved to the ICU and placed on a ventilator. He was a high risk patient for severe COVID. He is still on the vent and the doctor gave him a 10% chance of coming of the vent. Wednesday is when his vent. So he got the severe case and mine was miner case. I just treated the symptoms of the COVID Tylenol sinus and ultrams for the Fibromyalgia pain.

[desquinn Partner Volunteer FMAUK Trustee in reply to Sarahvit]

Hi Sarahvit I would be interested in the source of this study. To my knowledge and the research available the typical fibromyalgia (on fibro alone) person will have the same expereince or chance of similar experience as someone without.

This is in terms of :

risk of catching,

severity of covid symptoms

risk of ill effects such as hospitalisation, icu or death

timeline of recovery from covid symptoms

effectiveness of vaccine

risk of and severity of, side effects from vaccine

etc.....

slight modifier to the above is that what symptoms or effects that happen and if they are pain related we **may** feel that worse.

I have not seen anything that contradicts this from a research or evidence point of view.

[Sarahvit in reply to desquinn]

It was in an email that I get from someone who has fibromyalgia and Lyme disease who puts together a news letter. She is here in the US but don’t remember her name. I shared the study to my Facebook page. I’m not in a good spot to remember right now. My husband is on a ventilator in ICU with COVID not expected to come off the vent.

[desquinn Partner Volunteer FMAUK Trustee in reply to Sarahvit]

sorry that you are going through so much.

[Sarahvit in reply to desquinn]

Thank you desquinn. He didn’t make it.😢

[Brassylady in reply to Sarahvit]

So much for the vaccination/booster then, which is actually just the vaccination again. The ventilator is something that I would avoid at all costs (if at all possible) everyone that I know that has gone on, has struggled. I have Covid right now, Fibro too, never took the vaccine, had a bad cold and am on the mend, thank God. This Covid wont disappear until everyone builds an immunity obviously and I dont believe there will ever be a vaccine to cure a cold and the SARS virus is a cold, pure and simple!Meanwhile I hope your husband recovers soon, it is strange how some people react differently.

[desquinn Partner Volunteer FMAUK Trustee in reply to Brassylady]

quite a few things that I think you are wrong on but saying it is just a cold is like saying a heart attack is just muscle ache. You can make a simplistic argument but that's about it.

Glad that you are doing fine but that is not everyone's experience just like the person you are responding to.

[LisaSnow FMA UK Volunteer in reply to Brassylady]

Hello Brassylady,

The majority of cold is caused by rhinoviruses, whereas COVID is caused by a new coronavirus named SARS-CoV-2. The two virus classes are completely different. Pure and simple.

I hope you feel better soon.

[Sarahvit in reply to Brassylady]

Thank you Brassylady. He was high risk for COVID to have a severe case. He did well the first 6 days but then his health deteriorated and 22 days later after coming off vent almost 19hrs before his passing. I had the vaccine 3 doses of the Pfizer and I caught COVID from my husband who caught it in the ICU the time during this long hospital stay. My worst time was Christmas Eve then felt better Christmas Day and recovered. My husband never recovered when it hit him hard late Friday night Saturday morning before Christmas. Sadly he never recovered. He had the J&J shot never had the booster.

[Coffeefan in reply to Sarahvit]

sending hugs, hope he recovers x

[Sarahvit in reply to Coffeefan]

Thank you Coffeefan no sadly he didn’t make it.

[Coffeefan in reply to Sarahvit]

Sorry to hear that 💓 x

[Sarahvit in reply to Coffeefan]

Thank you. ❤️

[Coffeefan in reply to desquinn]

I had the cough and loss of taste as well as the fever. I tested positive 3 weeks ago and i'm exhausted but i was the last in our household to actually test positive.

[JayCeon in reply to desquinn]

Hi Des - would you believe it: our "friend" Gillis is responsible for the study mentioned, and he's basing it on people "diagnosed" by his so-called FM/a-test (concentrating on the increased pro-inflammatory IL-6) so I spose selection bias. So that's what he's up to nowadays...: This is the original study journaljammr.com/index.php/...

and this is what he tells the news

fox23.com/news/local/doctor...

repeated here boston25news.com/news/docto...

(Came across it yesterday research-searching histamine & cytokines to understand my jab-sfx (probably histamine intolerance), then found this going thru the latest posts...)

[desquinn Partner Volunteer FMAUK Trustee in reply to JayCeon]

thanks for the connection and the STAT journalist was implying Gillis was moving into (long) covid. He is also apparently still progressing BCG although does not have the connection (if he ever did) to the original researcher.

His statement of not knowing of one person with fibro having died from covid or only one being hospitalised just rings alarm bells. I know of people directly (or their family) that would refute this. And my sample size is smaller than his study.

[JayCeon in reply to desquinn]

I'd think the detail in which Denise Faustman published the trial (compare the versions above right) necessitates a connection:

clinicaltrials.gov/ct2/show...

The STAT article says "no longer" connected, but I agree that may be a misquote, as in 2 different forum posts Alan Silverman himself said "was told that Dr. Gillis was not associated with the lab." - which I spose leaves it open - I asked Alan back, but got no answer.

[LisaSnow FMA UK Volunteer in reply to desquinn]

"Regarding the 2,195 patients, a total of 82

patients were found to have evidence of COVID-

19 antibodies. That makes for a percentage of

3.7%."

## What antibodies? Antibodies from.contracting COVID or antibodies from receiving the vaccine?

Oh they then tell you, "Of the 82, 42 had been diagnosed to have

COVID-19 by a personal healthcare professional.". ... 🤣🤣🤣🤣

I bet Dos personally knows more than 42 fibromyalgia people who have had COVID..... IN FACT, on this forum alone we can see at least 10 members who have had COVID.

This study is crap. This was a paper misguided as an original research study to sell that "biomarker" that after having gone to the market for more than 8 years no respectful medical professional will prescribe or recommend to patients.

[desquinn Partner Volunteer FMAUK Trustee in reply to LisaSnow]

my sample size was from internal charity and direct contacts rather than online communities. From a volunteer passing away to others having bad hospital journeys to those who "just had covid" and were suffering from really bad illness at home and afterwards.

But irrespective of personal /anecdotal experience as that is inherently unreliable, Mr Gillis has practices and history that would give me more pause than any other study producer and hope that confirmatory results are forthcoming from other unconnected bodies of good standing.

[Macaulay1]

Hi I had covid in the September before the jabs were available and although I had it mildly, thank goodness, it took me months to feel “normal” again. Just hang in there and do the things that help you cope with the fibro normally and it will improve albeit slowly.

[Porteous]

Hi Cora28, Happy new year. I had Covid about this time last year, it absolutely floored me and I cannot honestly say I've been normal since. I think I have more pain all over my body and the flare ups are more regular and last longer. I have particular pain I my feet and the palms of my hands, typing is a pain in the, well you know what I mean.My saving grace I suppose is my mental resilience and strength. I have an outlook on life that you only get by being cynical and grumpy based on a good sense of humour.

I think that I'm beginning to notice that people who are close to me are being fatigued by my constant warbling on about being in pain, I take my medication and look for the sweet spot of maybe an hour when the pain abates and I can switch off and enjoy something.

I work two jobs, one is in a special needs school, I say this as my job makes me realise that although im in pain I I have a lot to be thankful of. My second job is as a part time self employed decorator, this allows me time to reflect and focus on my many ongoing issues with pain, I almost go into a zen like state. I'm telling you this as keeping my mind away from pain as much as I can help to manage it.

I'm also trying to ween myself of my pain killers, I tried before last year but had a flare up and couldn't cope so I went back on my full prescription.

I also am exploring listening to specific frequencies that may help with healing but that's very much in its infancy.

I hope this helps, please let me know.

😀

[mkw30]

Try taking some vitamin D. Hope it helps

[Kerno]

The fatigue and aches and pains are hard to tell apart but the Covid symptoms for me were definitely worse headaches, sore eyes, runny nose and cough. I took to bed for complete rest, the enforced isolation was a godsend from my responsibilities to elderly parents and work. I did make sure I have had plenty of fresh air with open windows and sitting outside wrapped up warm whenever the rain stopped. I've used a himalayan salt inhaler with iodine throughout the day. Practised Wim Hof breathing, relaxed my body and mind as much as possible. Had cold showers after warm ones whenever I could summon the energy and drank loads of warm water with lemon, honey and ginger. Totally practised self-care and focused on me only (ok and amusing and feeding my dog!) Kept thinking my body is going to exhaust itself anyway fighting the infection so I can only help it by treating it, and my mind kindly. I've discovered isolation suits me perfectly. All the best with your recovery, just remember it is no quick fix and be patient.

[557755]

I got Covid end September and am now at 3 months with long Covid. I'm supposed to be going back to work tomorrow (I'm a teacher) and have felt worse than ever the last few days. I really thought I was getting better but a feature seems to be just when you're hopeful it slams you back again. I currently have a dreadful headache I can't shift, intense nausea, and lung/chest pain and breathlessness. Fatigue is similar to Fibro flare fatigue so I don't count that as long Covid. Plus my neck and shoulders are in a flare exacerbating the headache. I have done 3 lateral flows over the last 3 days as I'm convinced I've got Covid again (mind you it took until day 5 with Covid symptoms before the lateral flow tested positive previously so that doesn't necessarily mean much). In comparison to the long Covid, the Covid was horrible but not the illest I've ever been. I'd had 2 vaccinations at that point. Good luck to everyone out there - I hope you fair better!

[Oscarpops in reply to 557755]

I had covid 28 larch 2019 i was diagnoised with long covid for 14 weeks and off work.I went back to wirk but felt dreadful all the off i was in pain and trying to sleep.

I had blood tests and was found to be several deficient in folic avid and vitd taking both of these helps leg pain a bit.

I got a chest infection january 2021 ended up off work 5.5 month due to a fybro flare and the vaccines brought out my long covid for w couple of weeks each

4 months i managed it by yet again as much sleep as possible when not at work then while at work got horrific chest pain, i work nights for 111 and was assessed sent to a n e, there i had blood test which ruled out heart attack , i had chest xray and a cat scan with injected dye these showed sir pockets in my lungs potentially caused by covid and costochondritis i have now been off work with these 10 weeks and had another chest infection .

I also diabetic type 2 which was well managed until i had covid which then sent my sugars high., after nearly 2 years I'm just getting them right. My taste has changed since having covid , i cons6antly have nausea unless i wear a travel sickness band on my wrist, if i don't rest i get very weak frm the fybro, brain fog can be sudden and random, costochondritis is more common with fybromyralgia sufferers but the pain from this i can't manage, the heightened sense of noise and smell often ruin going out.

I totally think covid is worse for most fybro suffers and takes much longer to get over. Its 21 months for me since i had 8t and i can honestly say i have never been ok for a full day since.

I hope you feel better soon and sorry to paint a picture of doom n gloom, one thing i have definetly learnt is do not push yourself rest even when you don't think you need to, break things down into smaller tasks, if your not ready do not go back to work ring your gp and.explain. when you do go back make sure you rest when not there, try and get fresh air everyday, maybe have a cat nap on your break, have an orange on your break too or some form of vit c.

Hope you start feel better soon

Xxx

[ScouserA]

Hi I had covid before Christmas and I ended up with covid pneumonia my body is still aching now and the headaches don't seem to go away. My back is in agony constantly I feel horrid most days with fibro anyway and I'm only 36, it does my head in that there isn't much known about fibro and anything that's wrong with you, the docs seem to blame it on that. Hope your ok.

[Michelleswshopping]

Yes luv I was the same thought it was fibro playing up and then my chest started . Was awful the symptoms

[Terber]

2 vaccines 1 booster 1flu and I had covid. I have either long covid or long fibro. Each jag made my fibro worse and covid has made me still bad. I don't expect everyone with fibro will be the same . My symptoms were fibro like, I didn't lose my taste or smell. We managed to infect my mother, she is 84 unvaccinated she refused any of them and only needed a little oxygen. So I would say don't worry one another because everybody is going to have it differently.

[Coffeefan]

I came out of isolation on xmas eve and im still stuggling with fatigue, i just want to sleep. Hope you feel better soon x

[JayCeon]

Good question! Hadn't looked for that yet, just been concentrating on taking antihistamine stuff for the jab-sfx recommended on Health Rising I've already posted. But hadn't seen this page yet - have you? - where the in-/famous 7: Clauw, Cohen, Gillis, Liptan, Shiller, Teitelbaum (of course the most guarded) & Wolfe all recommend the jab, and

regarding what to do Shiller recommends"Whether you get vaccinated or not, doing general measures to help immunity and overall health is a no-brainer. That includes regular moderate exercise, stress reduction, good social connections and finding ways to cultivate emotional health. Research suggests regular intake of an appropriate amount of vitamin D and zinc are protective against viral infection. Theoretically, quercetin can help zinc get into cells and that can slow viral growth. It’s also a good idea to eat a diet low in processed food and simple carbohydrates, and high in nutrient-dense foods, lean protein and lots of fruits and vegetables, unless another medical condition makes it a bad idea."

and Teitelbaum recommends optimizing his SHINE protocol (= supplements).

fedupwithfatigue.com/covid1... (originally published on prohealth.com, can't find it there tho.)

Another one (Apr20) in a similar vein: "For prophylaxis, the medical school recommends vitamin C (500 mg) and quercetin (250 mg-500 mg twice a day) with zinc (75 mg-100 mg per day), melatonin (0.3 mg-2 mg) each night, and vitamin D3 (1,000-4,000 IU per day). Famotidine (20 mg-40 mg per day) may be added to the mix. For patients with mild symptoms, EVMS recommends the same combination... [I've cut the following part as that has proven unsound. Also zinc of 75mg can be an overdose, I'd also be careful with everything above 30mg and watch for sfx. And not everyone (e.g. me) tolerates melatonin. Famotidine is mainly to decrease stomach acidity. These are similar to the anti-jab-sfx-recommendations. However I've found something that seems to challenge vit. C for that and stopping it may be helping me...]

uspharmacist.com/article/co...