I got Covid recently, and had NO FIBRO PAIN for 6 weeks. Similar for other viruses I had in the past.
Has anyone else noticed this? Could be significant for a future treatment?
I'm desperate to find something to help the chronic pain. Fibro affects every aspect of my life. Some days i can't get up out of bed, or walk. I've tried different things, but nothing seems to help. I've cried bitter tears. If only there was something to help the pain. I tried medical cannabis but didn't like the way it made me feel. Zolpidem is actually the most effective pain-killer, when I take it at night to sleep.
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i also heard some people who got the vaccine and went into remission
I personally know people who took antibiotics in the past and also had no symptoms
Some women during pregnancy experience no symptoms
fibromyalgia describes symptoms of a syndrome, not the root cause of the syndrome. I think it can be viral. Virios is working long time in a drug who could perhaps helps a lot if this is the case:
Finally, i know the official position is that there is no cure (but based on what when there is no root cause or even way to prove the syndrome?). I personally also know people who had fibromyalgia for years and are now without any symptom. Cure or remission? I dont know
Jose sorry for delay in getting back. Thanks a lot for your reply. I really appreciate you sending the link. IMT-1 sounds very promising.I tend to be a dispassionate and skeptical type of person. I believe the connection between presence of a virus in the body and absence of Fibro pain while with Covid symptoms shouldn't be underestimated, although it isn't every Fibro-sufferer's experience, and could potentially be relevant in future research. Thanks for checking in!
by the way, can you list the things have you tried? have you visited a chiropractor? alignment of the atlas is one of the things that helps to reduce symptoms
I have tried cymbalta which reduced the original paint by a big margin. Zolpidem always helps pain when I can get it. Medical cannabis THC in combination with CBD was helpful to a point but I didn't like the way it make me feel although it helped with sleep. I went to a chiropractor for a preliminary visit but didn't really have the trust to stay although he did speak about this realignment procedure.
Good to hear that you got some relief from fibro symptoms while you had covid - but unfortunately it is probably the opposite for the majority of people, with a flare up of fibro symptoms when they have a virus or other illness
While there may be no cure (at present) there are many things that people do to manage pain - however, the reality of having a chronic pain condition is that you often have to learn to live with the pain, as often medication and other treatments only reduce the pain levels not take them away
My pain toolbox includes medication, cbd, pacing, exercise /activity, heat, distraction, complementary therapies, weighted blanket etc
Hi Hazel many thanks for your reply. There is a very interesting link included by JoseT above, on imt1 - fascinating article about potential treatment in the very near future
I had Covid about a month ago I think because it hit me and husband fairly hard I had too stay in bed for a few days @then a few essential s like meals too ease back in , I didn’t notice my pain as I’m guessing my body was resting and then dealing with cold , headaches etc, rest always relieves my pain and I try hard too do the pacing method too cope, have you had a catch up with your doctor lately ? I’m on duloxtene and some days I am able too have Codiene but not every day doc says which I don’t. I went too Portugal about 18 years ago it was lovely , cannot believe it was that long ago ,time flies x
Hi Yassytina, thanks for your reply and sorry about the delay in getting back. Portugal is great compared to Ireland because it is much less damp and so better for fibre symptoms. Dulixitine was the one thing that originally helped the pain a lot.There is a very interesting link included by JoseT above, on imt1 - fascinating article about potential treatment in the very near future
Hi, I've always noticed my body or brain only lets me deal with the pain that's shouting the loudest (if that makes sense). If I have a really bad migraine, that is all I have. It's as if your body/brain knows you can only cope with so much at the one time? Maybe just me though 🤷
I believe that, although sufferers of fibro, ME etc have a lot common symptoms, there are many causes, which is why different treatments work for different people. Covid made me worse but I did find out that steroids help me feel normal again, I can walk normally, I am less fatigued, no pain and it is great whilst it lasts. Unfortunately, you cannot take steroids as a long term treatment as it comes with a number of drawbacks and negative effects. Ibuprofen calms my symptoms enough to take the edge off, without Ibuprofen I feel terrible. This, I think shows, that in my body, inflammation and a dodgy immune system is most likely causing some of my problems.
Yes, I have noticed that whenever my body has something substantial to fight, my pain goes away to a large extent, I noticed this when I had covid, or any other infection, and thought that it pointed to Fibro being an auto immune problem, as it would make sense if the body stopped attacking itself, and focused on the virus, so I have focused on healing the issues that may be causing the auto immune system attacking itself, leaky gut, chronic sinus, etc and have managed using diet ( plant based and meat, low carbs, no sugar or gluten, no chemicals) and supplements and Chinese herbs and breathing oxygen under pressure and accupuncture to lessen the symptoms to a point where I have an almost normal life, and my pain levels are low enough to enjoy it.
hi Crisbel, Sorry about delay in applying. This really interesting to hear you say this about the auto immune system, and It's what I suspect myself. I wonder if it could be possible to trick the immune system by taking very low doses of a harmless virus in order to try and reduce fibro pain! Of course if one were to say this to a medical professional they will probably think I was mad!
Thanks for your suggestion about the regular physiotherapy, I know I'm not doing enough. of this.
There is a very interesting link included by JoseT above, on imt1 - fascinating article about potential treatment in the very near future, wasn't able to copy the link directly and paste it here. x
we coexist with many viruses in our bodies all the time so I’m not sure that a weak virus would be effective, it seems to me that my body only gets less painful when there is something fairly serious for it to deal with.I agree that keeping the spine aligned lessens the pain, I have a hyper mobile spine, and when it is out of alignment the pains in that area and down the nerve paths affected are much worse. I am lucky that I live in an area where there is someone who can realign my spine without cracking and jerking my body around, so that really helps
The imt-1 trial you mentioned uses a repurposed compound that combined two existing antiviral medications, one of which is also a potent anti inflammatory. So if it works it is because it SUPPRESSES any viruses that are dormant but have low level of reactivity. Adding any viruses (no such thing as harmless viruses I am afraid) you would more likely cause worsening of fibro symptoms, based on the logic of this new medication.
I also do believe that many illnesses eg fibro has to do with viruses, but am no scientist and have no proof. Just know some people who were ill and after a bad flu etc their symptoms were gone. So it could be to do with virus, or something else. Who knows. Hope they will find out some day...
The average amount of legs for humans is below 2 so most people are above average
If you have a 100 thousand (or a million) people without fibro or with fibro there will be some people that are outliers when looking at how many legs they have or any other attribute you would like to look at and measure. But there will be a distribution with a lot of these measurements fitting what's called a bell curve. Most people will be in the middle will have 2 legs and some may have less and even fewer are likely to have more than 2 like Frank Lentini.
There are merits to looking at people outside of this bell curve but for every population there will be outliers and they will not be typical of the general population. So looking at the OPs original question it could be significant and it not just a single incident but where does it fall on the bell curve to be statistically significant. Basing good practice on the outliers is not going to be productive or perhaps meaningful just like Clarks with their shoes or M&S with their trousers will not cater to the Frank Lentini's of this world.
My daughter was diagnosed as having FM in 2009. 1999 she started getting headaches/migraines (MRIs of 2009, 2016 showed a Cyst in her head and 2021 MRI showed the cyst grown bigger. These Cyst main symptoms are headaches.
2005 she started to get lower back pain (X-Ray in 2020 said curved spine- MRI of 2021 laying down said normal)- she is now trying to find out if she has a curve in her spine or not!
2006 she had operation to remove small lump from right shoulder, within months she had painful bent arm, which she still has today.
2008 she badly damaged her ankle, taken to hospital no treatment - continued to be painful swollen, because she would compensate for her Ankle pressure was being put on left Ankle within year both Ankles were painful.
2009 Feb She was diagnosed with FM without any testing to rule out any other conditions at Guys hospital by Professor Davis, who only touched her body in points asked if she had pain!.
2009 MRI showed cyst in head and straightened neck - she was not informed of this and left
2013 High Uric Acid levels found in her blood, she was never informed and left. (This can lead to Gout a very painful condition of the joints)
2013 Her cholesterol shot up to extreme high within 12 weeks of a normal test remained high since.
2015 GP started her on a road to 8 years of opioids being prescribed to her that did nothing much for her pain and different kinds were used over the years and with other medications such as Antidepressants and dreaded Pregablin.
2016 MRI showed the cyst in head again and a straighten neck again was not informed and told satisfactory
2019 She was taken to hospital with severe head pain and blurred vision had CT scan, the CT scan does not mention the Cyst and been waiting now for two months for the hospital to reply why Cyst is not mentioned in the results and did the CT scan pick it up.
2019 Started to get Abnormal Platelet counts.
2020 CT found inflammatory changes in the bowel suggestive of IBD, failed to diagnose which IBD she has and was left.
2020 end of year felt like she was dying, she bloated in her face badly, put on 3 stone on within few years, and at the end of it all and in severe pain mainly her neck, arms and constant headaches daily and Migraines weekly.
2020 X-ray showed slight problems in the bones in her feet and hands and she was not told! Again GP put Satisfactory and that what she was told!
2021 March MRI showed the Cyst grown bigger and the neck straightened - again GP put No further action when phoning for results this was repeated to her misleading her the MRI was normal and nothing found.
In October 2021 she asked for her whole file, and this is where the above was found. The above is not everything but a good look at what was happening to her. Today, she is fighting to get the Cyst removed from her head and help with her straightened neck, and all the other things that were found and left. She has put herself on a strict diet to avoid high purine foods. She is trying to reduce her all her medications, come off pregablin, antidepressants showing improvement in herself a bit, not bloated in face etc, Opioids is an impossible fight at the moment and do nothing much for her pain. If you not a copy of your entire GP file or hospital file, I would suggest you gain this and look over it. I am not sure if she gets all her issues dealt with her pains will resolve, but she should have had a chance years ago. Not saying anyone should come off their medications or anything just saying about my daughter and her experience and what she going through. She had Covid she had the pains but they were much worse.
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