Just a thought: Has anyone else... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Just a thought

ShelWhitt profile image

Has anyone else wondered about long term covid. I have had Fibro for over 30 years (diagnosed 12) but to be honest have never really accepted the diagnosis. Even now I am still constantly looking/hoping for answers .(I also have hypothyroidism which has similar symptoms) . Having read some of the long term covid symptoms/reports I can't help but wonder at some of the similar symptoms to fibro and am thinking could fibro also be the result of a virus infection which has weakened our immune system. I am having a really bad time at the moment which isn't helping. I would appreciate anyone else's thoughts.

43 Replies
desquinn profile image
desquinnAdministrator

fibro definitely could be the result of a virus and is one of the environmental triggers we mention. But as to compromising the immune system much less certain and does not explain car crashes, emotional trauma or giving birth as other traumas.

ShelWhitt profile image
ShelWhitt in reply to desquinn

Hi. Thanks for replying. That is the problem though. No one really knows. I have had several traumas over my 79 years, any one of which could have been the trigger, and have always suffered with anxiety and stress(obviously brought about through living with fibro, whilst bringing up two daughters; working full time; having a husband involved in politics; then looking after my elderly mother, and now running the home which seems to be a constant nightmare in itself, plus caring for a husband with dementia; copd; is barely mobile and has other health problems . When I am having a bad flare, I sometimes feel that I am living a nightmare and just wish it would end! Take care. x

Maz20 profile image
Maz20 in reply to ShelWhitt

Ohhhhh I feel for you. And it seems the stress you can’t get rid of and then you don’t get better.

ShelWhitt profile image
ShelWhitt in reply to Maz20

That is so true Mazz! xx

Hello I watched the long Covid programme on TV last night and a lot of the symptoms sound like fibromyalgia. I personally think I have had fibro since being in a car accident, in and out of hospital at the time and never fell right since then to now and we are talking 20+ years. I hope you are okay, we all have bad days, here is you need a chat x

Thanks for responding. I fully understand all the theories/reasons put forward and don't discount any of them. There are several things I could point to as the cause in my case, but who knows?. My dad died suddenly aged 60 when I was 25, and I had what I now think was a mini stroke. Involved in a minor car accident resulting in whiplash when I was around 35 .Had a hysterectomy aged 47 for endometriosis (since 14) and never been right since.Plus there has been several other incidents I could pinpoint. Unfortunately that isn't really the issue is it. All we all want is a cure. I have had loads of bloods tests which don't seem to show anything major but I do think the nervous system, endocrine system and immune system have to be involved somewhere . But then I'm not a doctor, just one of the people suffering! Take care. x

vmagpie profile image
vmagpie in reply to ShelWhitt

I’ve read about trials using metformin to treat fibromyalgia as they think it could be something to do with messages to and from the brain the same as diabetes. Also posted an article above about research relating to it being an immune system thing. Hope you have less stress today x

Fmok profile image
Fmok in reply to vmagpie

Hi I have been on metformin for diabetes diagnosed 3 years ago I take 3 x 500mg and it has done nothing to help me with fibromyalgia I have had fibromyalgia for 15years

vmagpie profile image
vmagpie in reply to Fmok

Ah that’s a shame but good to know. I think it’s early research. Thanks for response. Hope you get some relief soon

desquinn profile image
desquinnAdministrator in reply to vmagpie

vmagpie "I’ve read about trials using metformin to treat fibromyalgia as they think it could be something to do with messages t"

Would like to see the source for this but I believe what your referring to is a retrospective analysis that was carried out and observed some interesting results that led to some conclusions. But I think the study was pulled but not a 100% but am sure that the results were open to interpretation and there would be a need for a trial with the drug with controls and a focus on fibro.

Hi shelwhitt, I’m new here ,was just reading your post ,you said about the immune system that’s when I felt alert ,as when I got diagnosed they told me my immune system was shutting done ,they put it to the shock of my mother passing ,I’d just like to say thank you all for letting me in ,I don’t feel so alone now x

I have thought herpes has caused it for me. As when I was getting flare ups the pain and flu like symptoms are the same but now I’m in pain most the time? I’ve only been diagnosed after 2.5 years and then just to be sent a link from the doctor for pain management and nothing else??? 😪

ShelWhitt profile image
ShelWhitt in reply to Maz20

So sorry Mazz. If only we had more answers. My doc is OK but I can't take any of the medications she has prescribed so I think she is at a loss.

My friend brought her Mother with her, on a weeks visit. No sooner was she here, Mother took to her bed for the duration and was quite ill with something flu like and nasty. I was quite annoyed that she didn't tell my friend how ill she felt before they set off. One of those people who hates missing out on anything. Anyway, by the time she left, I had caught whatever it was. I was very ill. The Doctor confirmed a virus. From that point, I showed all the symptoms of Fibromyalgia and I never felt the same again. However, my Doctor suggested it was the trauma of having a pacemaker inserted, in a two operation, under local anaesthetic. I think it was the virus, that caused my Fibromyalgia.

in reply to Florene

Do you know I think there is something in that I had a hysterectomy at 44, 2 surgeries the second one to save my life but I caught a terrible infection which put me in a private room on a drip obviously recovered but 6 months later had to have a tooth removed which resulted in some bone of my jaw coming out too then was told I had a severe infection in my socket since then constant e.coli infections and shingles mmmm I wonder 😊 I also had to have a blood transfusion I wonder if the blood I was given like in the article could have triggered this as I’ve never been well since definitely food for thought 😊

ShelWhitt profile image
ShelWhitt in reply to Florene

It is so frustrating. Of course we all would like to know what has caused it, but it is more crucial to discover what is preventing us getting well. In my own situation I am getting worse. Up until maybe 10 years ago I was living life pretty much normally, but things have gone downhill since then and that is so frightening as I can't do anything to stop it. I know I am not going to get any support with this suggestion but I used to be a smoker and I think it helped, particularly with stress. I have been much worse since I stopped. x

Patdoyle profile image
Patdoyle in reply to ShelWhitt

I used to be a smoker too and it certainly did help. However it also causes COPD and cancer so won’t be taking it up again

ShelWhitt profile image
ShelWhitt in reply to Patdoyle

Devil and deep blue sea springs to mind. I know all there is to know regarding smoking and agree with all of it, and have no intention of starting again, but life is a lottery, smoke or not 50% of us will die from some form of cancer, or something equally horrible. Most of the drugs prescribed have side effects and its a lottery whether thy work or not, and although they won't diagnose diazepam for more than 2 weeks at a time because of addiction, I can't see the logic as far as I can tell most of the drugs prescribed are addictive anyway, as if you want to come off them you have to be weaned.Sorry for the rant. Take care.

My thought is medicine is not perfect but dealing with the symptoms is most of the battle..My fibro then proclaimed MS. I have been told that fibro still in some med schools is not acknowled......fybromyalgia....fiberous pain, inflamation etc.I also have thyroid issues and still take HRT after hysterectomy plus genetic vit D defiency....sleep has not been mentioned but how totally sleeping heals for that day.Best wishes jj

ShelWhitt profile image
ShelWhitt in reply to jackiesj

Hi JJ. That is the trouble. There are so many independent issues involved, in my case at least. Digestive - Irritable bowel,Gilbert's syndrome. Constant abdominal pain, constipation, nausea. Nerves - tingling and numbness in hands, feet and legs; One sided chronic head , neck , shoulder and back pain. Weakness in thighs. CKD. Brain fog affecting memory, concentration and recall. Gritty, itchy eyes, floaters. Unsteady on feet. Chronic anxiety and stress. Frequently overwhelmed and emotional with frustration - crying. Insomnia. And the list goes on. But the worst part is that no one really acknowledges there is anything wrong with me, or even cares. I have long since stopped trying to explain, No one can understand and to be honest don't really want to. They have problems of their own. I know I am regarded as a hypochondriac so when I am having a bad time I tend to just say I have a migraine, or my back is playing up, if anyone actually bothers to ask, and leave it at that. My husband is aware but as he has multiple problems himself including dementia he tends to bury his head in the sand, unless it affects what I am able to do for him! Sad really. I wish I could change things, but I can't so just have to live/exist with things the best I can. Sorry for the rant but sometimes I really need to vent. Thanks for listening.TAke care. x

jackiesj profile image
jackiesj in reply to ShelWhitt

I am still hopeful in life(most times) that further research there may at least be some relief.I do know what it feels like for even a rightly close person to not even understand a "no cant today" without having to explain to no avail anyway...Try as we may to wakeup finding i am here....for some reason me and animals tend to understand more than me and people.You may understand that statement.During the pandemic was the one time(aweful as it is) i need no explanation why i stayed home.Here today is i hope a day for hope.Well wishes. jackie

caico profile image
caico in reply to jackiesj

Take care Jackie - you are definitely not alone with this horrendous condition:)

FM-rubbish profile image
FM-rubbish in reply to jackiesj

I so totally agree with you JJ. I found that not having to say no without coming across as ‘lazy’ or ‘uncaring’ or, the favourite one ‘a party pooper’, was such a relief. 😏

ShelWhitt profile image
ShelWhitt in reply to jackiesj

Thank you Jackie,i really understand where you are coming from. I must admist from being a social animal years ago, I am now somewhat of a recluse. I can't find the motivation to make small talk when I feel so ill and even worse I I don't want to listen to what a great time others have been having, it makes me depressed, so the best thing is to avoid socialising, which is not good, but it is as it is!

ShelWhitt profile image
ShelWhitt in reply to jackiesj

I totally agree Jackie. x

FM-rubbish profile image
FM-rubbish in reply to ShelWhitt

Hi Shel. I feel for you. This last year has been hell for a lot of people, but many, including my partner, don’t realise what’s going on inside our minds and bodies as FM sufferers. I honestly thought that I was losing the plot, but since I’ve been able to go back to teaching my over 60s exercise classes, I realise it was because I didn’t have a purpose. I basically let myself go, and felt absolutely useless and rubbish because of it...a viscous circle. Because I felt ‘ill’ I assumed that my life as an instructor was finished, but I can’t believe the difference in my mood since I pushed myself to resume classes. The members are SO pleased to be back. They don’t care that I’m not as active as I was, just being together again seemed to be enough. My head feels like a lump of concrete, I keep forgetting things, and am as stiff as a board! Hang in there and hope that things will slowly get better when we can all be sociable again. 😍

ShelWhitt profile image
ShelWhitt in reply to FM-rubbish

Thanks FM Rubbish.

in reply to ShelWhitt

Hi, your not a hypochondriac and I care I know exactly what your going through bodies are so complicated not everything is written in a drs handbook I think with all the mental health problems they don’t look outside the box about time they started to find a root cause look at Cher she’s done what she sings turned back time gimme some of that 😉💐

ShelWhitt profile image
ShelWhitt in reply to

👍

theguardian.com/society/202... my mother in law sent me this xx

desquinn profile image
desquinnAdministrator in reply to vmagpie

discussion on this is happening in this post - healthunlocked.com/fibromya...

the article says "suggests" but have a look at the link above.

Hello Sorry to hear your having a bad time I must say I share your thoughts I have fibromyalgia and years ago when I attended pain management my consultant did mention to me that it’s very possible that my fibromyalgia was cause by a virus and I have had a nasty virus which I just couldn’t shake off it took weeks so I do believe it’s very possible that viruses could be the cause I never forget that conversation with him it’s always stuck with me.

Hope you feel a little better soon I hope my reply will help a little

ShelWhitt profile image
ShelWhitt in reply to Niceday01

Thanks Nicedau01.

Hi. I totally agree with you about viral infections being a trigger. I had a really bad viral infection at the end of 2017/early 2018 and have never been the same since and believe that's what caused my fibro. (I also have hypothyroidism).

desquinn profile image
desquinnAdministrator in reply to Pinkhedgehog

Virus as an environmental trigger has always been one of the items that is considered. But a trigger, cause etc are different.

fibro who and why

👍

This article is very interesting.

theguardian.com/society/202...

desquinn profile image
desquinnAdministrator in reply to Florene

also within this post and been posted on the site several times.

"discussion on this is happening in this post - healthunlocked.com/fibromya...

the article says "suggests" but have a look at the link above.£

Florene profile image
Florene in reply to desquinn

👍

Mine kicked off into high gear after a bout of Shingles.

To be honest when I was watching something about long COVID I thought that they we’re describing fibromyalgia, the only difference I think I heard was that they were expecting symptoms to be all gone in a few years??

in reply to Soo25

Let’s hope if they learn about treating long covid then they might find something to help with fybro being as they are so similar 😊😊💐

ShelWhitt profile image
ShelWhitt in reply to Soo25

If only we could be so lucky! Maybe in time. But it needs to be quick I am almost 79 now!

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