Hello. I am new here but have been taking great comfort from reading the posts from others. It’s nice to feel less isolated by this horrid illness. I was relatively fit and well before contracting some unknown virus last year which appeared to attack my neurological system. First symptom was facial palsy, first one side then the other. Then came pain like I’ve never known. And fatigue. Don’t get me started on this! Lots of hospital tests, the only thing showing is a high positive ANA.
Six months later and I’m still off work. My consultant has said that whilst I have the presentation of Fibromyalgia he ‘doesn’t want to slap a label on me’. Not really helpful. He did say however that it appears a virus is the culprit and that it may take up to 2 years to fully leave my system. Has anyone else had a similar experience?
Wishing everyone a good (or at least goodish) day!😊
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Hiya. I think and told my rheumatologist about this that my problems started after I had glandular fever. he wasn't surprised as this is something a lot of fibro sufferers have had. everything/symptom fits into place over the last 30 years which is when it all started. I went to the doctors as I was getting worse with aching limbs, fatigue etc. to cut a long story short, I was eventually diagnosed by my rheumatologist with fibromialgia after first thinking I had lupus. it is a possibility I have both. I see my rheumatologist every 6 months and due a salivery gland test due to a very dry mouth and heavy/dry eyes all the time. I think the virus along with the chicken pox virus I had shortly before glandular fever along with traumatic events over the years has caused my illness. hope this helps.
Welcome to the FMAUK Community ! Which I hope you will find is a helpful and supportive place to be ! There's lots of posts to read and many lovely members to talk to about Fibro.
If you have not already done so, please take a look at the FMA UK website fmauk.org where you will find much more information, plus the opportunity to request a patient information pack or health professionals pack.
As a newbie, please can I mention that members prefer to answer posts that are locked to this community only. If you wish to do this, here's a link that explains how to do it;
for some people, a virus or long period of ill health can be the trigger for fibromyalgia starting ... i'm unsure if the rheumy meant that the virus could take 2 years to leave your body or the fibromyalgia - because unfortunately, if its the fibromyalgia then once you have it you generally have it for life - although you can learn to manage so that symptoms are at a minimum.
Hi sweetie welcome to our lovely forum. I m truly sorry to hear that you have been suffering so much. Unfortunately these viruses can kick start so many different things off in our bodies. That seems a very long time to me for a virus to leave your body. But I guess he knows what he is speaking about. However in your case I hope that is not the case.
I am sure that there will be others along shortly to welcome you to our lovely forum. We are all here to give you support and from time to time we also enjoy a good laugh 😂.
I truly feel for you sweetie and I hope that everything will settle down soon for you. Take good care of yourself. Love and hugs 🤗🤗🌹🌹😘😘🤞🤞
I LOVE your caption at the start of your post. It made me laugh, despite remembering how awful those days were and are sometimes nowadays.
So, yes, after 2 years, post viral infection, I do get better days. Thank God, because I had never felt so unwell as the first attack to my system.
I had everything you describe. I had been in very close proximity to my best friend for the 5 days she was suffering shingles. She had not uttered a word until one day saying antiviral meds had stopped her virus in its tracks. I was flabbergasted!
We had spent weeks going out and about, hot transport, sitting next to each other. Hugs on greeting etc.. I had never had chicken pox. One day, I developed a crop of blisters on my face and had flu symptoms. Then joints ached, I developed sciatica..... the list of new symptoms went on n on over the next 6 months.. too late for me to show a GP the blustery crop on my face...
So, yes! Pharmacist told me it will take a year to feel better. It took 2 years to actually say, I feel sort of better today.
I was/am ANA positive. Officially diagnosed now with Sjogrens syndrome, ?lupus, Washington. One locum Dr told me I also have fibromyalgia. Joining this site. I believe him! I have all of the symptoms.
As you say, these discussions, friendships, take away the awful shock, and isolation of feeling so downright, unwell, and suffering from on going hideous pain.
I now eat mostly gluten free, walk when pain allows, and enjoy life, day at a time.
Good luck, best wishes, as you adapt you will manage better days too.
Thank you for your reply. Sjorgens has been mentioned to me too due dryness and blurred vision. I think a ‘watch and wait’ approach is probably being made. Hearing the similarity in symptoms of so many people such as yourself is comforting. In the early days I was questioning if it was all in my mind!
Hi there and welcome , I had flu and then another virus straight after in January and I ve not felt so well ever since , will never know if this was what made my fibro/ me worse . Glad you are getting comfort from reading the posts , we have lovely members who I can see have responded already , hope to see you post again take good care xxxx
I got shingles in Jan 16 & then developed severe post herpetic neuralgia & that's when my problems started, the neuralgia was eventually dealt with after a nerve ablation, but I was left with fibromyalgia.
There really does seem to be a strong link with the chicken pox virus. I had been exposed to shingles prior to all this. Wishing you a good day and thank you for your reply!
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