As The header of this topic reads would you undertake it ?
When I mean cure or trial I don't mean such things as radioactive ☢️ therapy or anything that would involve being hospitalised etc.
Fibromyalgia is as you know a fast moving widespread pain that effects partial or total parts of the human body anatomy.
I'm not a copy or paster of online information whatsoever but I know 1st hand what fibromyalgia feels like as I personally suffer from it & IBS & ibd etc to name a so called few medical issues.
I'm tired & fed up with the same old pain/pains day in day out.
Even when I do ever manage to get sleep 💤 which in the world of fibromyalgia is a luxury for some & I mean unmedicated sleep,does anyone else wake up feeling nauseous or sick 😷 etc & I mean daily ?
Fibromyalgia has definitely destroyed my life totally in more ways than one.
For physical things I once took for granted,my body now feels like a half shot Vehicle battery that needs a good boost or jump 🦘 start.
The thoughts of being able to do things, simply is no longer there,as the mind & physical health are not engaging 😔.
Just putting a small bag of rubbish or trash out for collection is like running top speed in the marathon etc.
Sorry 😔 if this sounds like a rant but it's good to chat with fellow people who suffer with the same medical condition or similar issues.
Just a non professional medical thought of my own but I think the answer does not lie within bottle's of medication or though some drugs work for others & some definitely don't.
Kindest Regards
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Fibroguy66
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I would trial anything that could potentially give me a pain and fatigue free life.
What you said about being like a vehicle battery made me laugh. I own a vehicle battery booster pack, and have said I wish they could make these for humans. 🤭
I really liked your human booster idea. Yes I know what you mean today I went to the Dr as unable to get warm. All I got back was no idea.. So got to wait for an appointment with the orthopaedic doctor to see if it is my legs that are the problem.
Thanks for the reply, I am in need of help and support just now as not gone home from work as the house is cold but sat in McDonald's with warm food and drink. Then home to bed
Hello , yes I think any information that would help us fibro s would be great, I tell my friend there s no petrol at the station today meaning I’ve an empty tank . Dam cold and mostly hibernating indoors, I understand too have a rant I would give anything too be able too do some of the things like I used too ,keep warm .take care
All us fibro warriors definitely get this I'm sure. If I knew I was going to get some relief from pain I would trial anything within reason as I'm sure others would. Unfortunately I don't think there is enough research done into fibro. Some willing guineapigs on here.
Yes I feel nauseous when I wake, dizzy too, never rested.
And yes I would take medication to block the Fibromyalgia without a doubt. It has progressed so much now that it really effects everything do and I had to retire early dueto massive flare ups & a moron of an employer🥴
I absolutely understand your sentiments about Fibro. Each day on waking my first thought is usually not another day of this. I also have trouble with that thought because I have so much to be thankful for.I would not however be willing to try any medication after the awful few years of side effects whilst I was on gabapentin, amytriptyline and pregabalin.
Good morning all, l would be scared to try anything after the Covid jabs after effects 😩 but l do see a very good physio who is also a trained Perrin Practitioner, osteopath and nutritionist. Her recommendations are to do a little bit of everything to keep on top of fibromyalgia pain and fatigue. I refuse to take medication as it does not agree with me and affects my ability to work. So for me it’s regular Perrin lymphatic drainage, gentle stretches each day, vitamin supplements, heat therapy, pacing, talking therapy and so on.
Now all this seemed to be too much at one point but slowly l got used to the routine of doing it all. Don’t get me wrong l am still in pain from head to toe and some days l can’t hardly walk or lift my arms but l am in a better place than l was 5yrs ago 🙏🏼
My main hurdle now is getting others to understand especially work colleagues and managers. So l have had access to work assessments and work place adjustments (my disability passport look like a novel 😂).
It’s awful how we have to battle for support and have to challenge discrimination.
Stay strong 💪🏼 and positive 🙏🏼 fibromyalgia doesn’t define us we still have a lot to give 🥰
I have had diagnosed fibromyalgia for over a decade, which has got that much worse, say 20%, with Long Covid getting on to the 5th year! I saw an article about the Perrin technique and been doing the basic DIY exercise on the face/ neck for about two weeks, not aware of making any difference…is there anything physical to see that shows it’s working?
You are not ranting dear. When we read things like this, we know, we are not going mad with all we go through every day and that we are not alone in this terrible condition that does not get better but getting worse. When you have a good day or some good hours, you feel like, why shouldn't I continue to be well like this? You ask yourself. Next day or in an hour's time, you start to get weary and then the circle continues. It is hurrieble! Good morning and my hugs 🤗🤗to you and everyone.
I would be so scared I could end up feeling worse and in even more pain and distress. I would not therefore in answer to your question Gentle swimming and moving in water I feel has helped me cope through the years , force myself to go almost daily The pain of Ibs is a nightmare conxtanly and all the other quirky things to put up with I sympathise with you in what we deal with.
Yes I started swimming 50 mins 5x a week 20 months ago…can’t say it’s reduced fibro.pain, but stiffness probably less, and at least my head knows that I am not deconditioning. But my best single thing I do to keep the worst pain/ stiffness at bay ( which can be horrendous) is a 6-8 week visit to gentle McTimoney trained chiropractor…loosens up neck, shoulders, ribs, hips…
I really had hope when I first read the headlines, I thought at last someone is going to help. I feel totally washed out, I’ve had one decent nights sleep in three weeks. I really thought I could cope with the pain but just lately it’s got the better of me, I’ve always been an upbeat jolly person but this has changed my whole personality. I’m feeling physically sick with the pain as it’s worse at night, my arthritis has got worse or maybe it’s just I feel pain everywhere. I just don’t like the person I’ve become and it’s hard to explain to people how bad the pain is, so it’s a definite yes if someone came up with a trial as I’m getting no help from my doctors surgery apart from handing out drugs that do nothing to ease this nightmare!
I think if you visit your GP they will either tell you to drink more water or give you drugs. This is such a "shadowy" disease that the only people who can advise you are other sufferers. Now, I'm going to say something shocking. I DON'T THINK I SUFFER FROM FM ANYMORE! I now have compression fractures (7) in the spine and the excruciating pain from those has apparently wiped out any or most of my FM symptoms. It's strange, isn't it?
I can’t even see my GP!! If you phone up there is a three week wait for an appt I’ve got to the stage I’ve given up on them because of the owners that have taken over our practice we have lost over 12 members of staff and survive on locums who don’t know you, it used to be a fantastic surgery before they arrived!!
I can empathise with you; I have been with my GPs for 5 years and never have I been able to get an appointment. Good job I used to be a nurse and can self medicate with Ibuprofen!
Well, Fibromyalgia is unlikely to go away. It will still be there in the three weeks time you have to wait for an appointment. I'm so sorry to hear how your surgery has been taken over by power seekers.
Although I have replied above about how I ‘control’ my fibro….of course I’d consider trialling a ‘cure’ with perhaps a few queries and lots of research. But if I could lead one I’d do it around sufferers and possible low FT3 thyroid hormone…as for me my worst symptoms when I could only walk in tea leaf-sized footsteps, for pain and stiffness, I have never had again after I improved my thyroid hormones (diagnosed overt hypothyroidism but not treated suffiently for 15 years).
I would love even just a remotely successful treatment, let alone a cure. The idea of spending the rest of my life with this condition and potentially worse is terrifying enough at the ripe old age of 27
Hi, im just tired of fibromyalgia being responsible for everything, i dont believe it, my doctor knows ive also been diagnosed with nfd and cfs, treatable by psychology, therefore all in the mind? My symptons are now affecting my eyes, and walking, the spasms in my legs, making me trip and have falls, its a diagnosis simply not believed by other medical facillitators. I dont feel like im being taken seriously at all, and you rant away, cause thats how im also feeling today. Phew
I hear you amigo. My feet sweat like waterfalls, I've got mineral deposits in my feet from standing blood. The pain is getting worse. Sometimes you do think of suicide. You do, it's completely natural in the moment. I tried once before after diagnosis, when I was on a lethal cocktail of Amytriptaline and Gabpacentin. In my opinion these are suicide pills. You'd never think of suicide, but the pills will take you there. They were also making the pain worse. Then a year later I was stung by a guard wasp and was unconscious for some time. I made my peace with death and was ready. Fate had other ideas. 6 shots of adrenaline later and 4 days in hospital in the Cancer wards mean I'm still here. Now when the freight train of pain hits me in the morning. Its been rolling all night, it's so strong that it partially paralyses me. Do you know the feeling of hunger when you can't move nor communicate? It's hell. It forces you to do something, to try and move, to break free.
What I've found is that when I'm in active therapy I'm better at dealing with Fibromyalgia. When I'm not, I freefall. Now I've taken charge of my health. No meds from the NHS anymore. I'm a cannabis patient who is experimenting with flower wet decarboxylation. This has been a game changer for me. I've also bought an electric foot spa with heater. This now keeps my feet warm at night and also helps to remove the minerals from my feet. Work is a pain. So now I'm in the process of changing my life.
Yes I would try anything as long as it free because I have spent enough money on things that don't work. I have got to the point where I'm giving up I'm to fatigued to leave the house 🏠 😢😱
yes I would jump at the opportunity to try it. I have over the course of the last 30+ years been involved in research studies and tried anything that made medical sense or logical reasoning I tried. What I learned 1. Research studies have been good because it adds more understanding of the condition and each study built on the previous one. 2. What works for one person does not work for another. 3. I do not have the placebo effect. 4. To pass the touch on down to the next generation of fibro warriors to continue the fight for research to better understand and hopefully find a cure. 5. I am too tired. I do pray for a cure.
Yes anything other than drugs. Although I have pushed myself . If you start gradually and believe in yourself ,there is more I found I can do , ok so I may experience the day after a bit of pain , but it's worth it. Bite size pieces.
Yes, I believe most of us would engage in some experimental therapy. Patience is not something most people with fibromyalgia have. Tablets have a marginal effect. I hear a lot about CBD therapy but that is expensive.
I would certainly take an interest; Read all about it? However, actually handing my body over to researchers, I'm not comfortable with that. In order for me to be treated I want to be an active participant in what we are going to do. Being a passive patient has massively backfired for me and my trust is gone. People make mistakes, get distracted or simply are clueless about what they are dealing with. Some really don't care at all. For too many, it's just a job; A good paying one.
My feeling is now that healing is a journey. It would be nice to have company. Someone to chew over the direction we need to take? Maybe who has superior medical knowledge? Who loves to research and take an interest? But having that doesn't mean they know what is right for me.
has anyone looked at the fibro books on amazon there are loads claiming to have the cure, the last i personally 'read a sample' of 1st chapter, was over £8! huh it stayed
we are targets be aware. sadly there may be a book there with the right info, you'd be broke before found it
would i like a cure well yes whom wants to live in pain, having every part of life go puff
do i want to be ripped off no.
as a collective here we are more likely to locate a cure or better situation, than the docs, we have more to gain
hence why I share,
this week am trying a blown up cushion,, as you know once 1 thing sparks the rest follows, cushion arrives today, looks like a flat gluten free squiggly cookie as the current in use memory foam hole cushion is great when sat it does flatten gets uncomfortable however try to move off it omg
my theory with blown up cushion is your constantly adjusting perhaps that may work for that area, have a anti burst ball chair, the ball would be inconvenient in car as passenger, lack head room when sat even in a soft top it could be drafty lol now that 'riding in my car' tune from suggs is in my head
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