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Physiotherapy for chronic pain (fibro)
debbiedo49
Member Posts: 2,906 Disability Gamechanger
Hi,
i recently self referred for physio as advised my my gp for symptoms of fibro and chronic pain. At the initial assessment I was advised that they don’t help with fibro as they don’t know enough about it. However I was advised to identify my symptoms and issues with chronic pain.
Today I had my third and final appointment as the physio said I had made progress with the issues we covered so she was signing me off.
The physiotherapist couldn’t have been any nicer and I can’t blame her for following guidelines.
it has been so disappointing for me as I had to wait several months for the appointment and than to be told I had to pick one specific issue or part of the body to target as that’s how it works now. Then to find out that appointment were every 2 - 3 weeks and then to be told I’m booted after 2 actual physio sessions. It’s beyond unbelievable when you are hoping for some help with a debilitating condition and made to feel like everything is suddenly fine.
So obviously I can self refer again for another issue I can identify and physio can help with. To be honest I feel what’s the point as it will probably be exact same. I feel that the NHS is sadly missing the point that such conditions are often whole body physically and mentally debilitating and require treatment for same.
What are other people’s experiences of physio for fibro or chronic pain on Nhs ? Is it worth the bother of all this waiting around?
Thanks
i recently self referred for physio as advised my my gp for symptoms of fibro and chronic pain. At the initial assessment I was advised that they don’t help with fibro as they don’t know enough about it. However I was advised to identify my symptoms and issues with chronic pain.
Today I had my third and final appointment as the physio said I had made progress with the issues we covered so she was signing me off.
The physiotherapist couldn’t have been any nicer and I can’t blame her for following guidelines.
it has been so disappointing for me as I had to wait several months for the appointment and than to be told I had to pick one specific issue or part of the body to target as that’s how it works now. Then to find out that appointment were every 2 - 3 weeks and then to be told I’m booted after 2 actual physio sessions. It’s beyond unbelievable when you are hoping for some help with a debilitating condition and made to feel like everything is suddenly fine.
So obviously I can self refer again for another issue I can identify and physio can help with. To be honest I feel what’s the point as it will probably be exact same. I feel that the NHS is sadly missing the point that such conditions are often whole body physically and mentally debilitating and require treatment for same.
What are other people’s experiences of physio for fibro or chronic pain on Nhs ? Is it worth the bother of all this waiting around?
Thanks
💜🏴
I am a fibro warrior !💜♏️
Replies
As a fibro sufferer I totally feel disgusted for you. I have recieved no help except medication ...I did attend a pain clinic for a assessment and was told i would be put on a list for peer support group and acupuncture. 5 months later recieved another appointment for assessment which i quieried as to was it for acupuncture group or peer group. Turned out to be another consultation with the same manager to decide treatment...the manager said she couldnt believe they called me in for this and that i hadnt been referred.....she was the one i saw originally ...was a joke! i gave up and saw a chiropractor for a couple of sessions. so unacceptable how fibromyalgia is "treated"
Also I need to refer separatelyfof podiatry which is an issue for me as I have plantar fasciitis or I think I do. Who knows with fibro?
Fibro is nerve related and much harder to find suitable treatment and advice for because little is actually definitively known about nerve damage. In general terms though usage of the nerves by movement or stimulation by damage should be avoided as much as possible. Generally nerve conditions can only be treated by rest and pain killers unless it is because of trapped nerves (sciatica) when manipulation can free up the problem.
Medication is mostly done with 5 pain killers specifically nerve oriented as the normal painkillers are not very effective, such as opiate based. The 5 main ones are Amitryptylene, Nortryptylene, Duloxetine, Pregabalin and Gebapentin and sometimes NSAID's can help (Non Steroidal Anti Inflamatory) such as Ibuprofen and others. The main 5 vary in strength from person to person for some reason and have no strength order that is standard. Personally Nortryptylene is the most effective for me as it has the fewest side effects but unfortunately is only available at low levels due to toxicity issues. Consequently I also take a low dosage of Pregabalin to help but I cannot tolerate it at normal levels or the others at all, too many bad side-effects. So I take opiates as well to cover the general spread of the chronic pain.
One thing to remember is that every manufacturer has to have a slightly differently different compound based on the helpful main chemical so sometimes a different make is worth trying. I, for example, cannot take generic Pregabalin and have to use a branded version, all due to side-effects.
I hope this helps or at least raises thoughts to a helpful level.
TK
you have managed to put into words what i have been unable to regarding fitness levels pain and fibro....people who dont understand fibro crash and mistake it for physical pain only do say do more exercise ...pace yourself when they dont get when you are crashing you can not do nothing ...thanks Debbie
I would absolutely love to try flotation therapy and find out if it helps fibro.
As far as I know anything like that is paid for privately ?
Lovd to hear other folks ideas and thoughts on physiotherapy and fibro or chronic pain.
Also I have gained 4 stone in 8 years with my conditions and being more at home and less active and on medication. I love how people say just lose some weight and you will be better. If only!
i have been through lots of pain clinics, lots and lots of various physio techniques.
i have just got my full pips and started to pay for my physio at home as I cannot travel anywhere due to not being able to sit up in my wheelchair. Since he started coming he does exactly the type of physio needed on my damaged areas that don’t work anymore ie pushing and stretching my toes, foot, spinel movements etc, in very very small steps, as this causes attacks if not treated correctly, plus massaging the painfull but dead areas etc, every time he leaves I feel really good even if I am left with pain or spasms, this is because he works on me for a full hour and I feel the pain is worth it. The NHS physio was so bad it made me worse each time, I had to travel and sit waiting which caused me to be in tears by the time I got seen, the physio was always rushed and I always felt they did not understand my complex problems, to me I always felt I was worse off, they used to try to do the minimum they could and sent me on my way. I really do recommend trying a physio at home, I am on benefits only but it’s the best 30 pound per month I have spent and now look forward to him coming. It’s not as expensive as you think. Try it out if you are struggling with the NHS physio. Has anybody else tried this way?
I to had a poor experience with NHS physio, Loire most people I was on a waiting list for ages before I was actually seen, after 3visits he felt he had done all he could for me, which was very little and was just clueless about my pain levels, I am now attending a MS centre, the physio and nurses there specialise in MS, what a difference it has made to my posture and balance issues, I’m very blessed to have this service available to me, having has MS for many years it just great to see a small improvement, wish everyone could have a service like this, good luck all 🧡
so glad to hear that you had a good experience and that you feeling benefit....long may it continue x