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Physiotherapy for chronic pain (fibro)

debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
edited October 2018 in Coffee lounge
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 am a fibro warrior !💜♏️

Replies

  • [Deleted User][Deleted User] Posts: 0 Listener
    Hi Debbiedo49
    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"
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    edited October 2018
    I know. I self referred to our g p surgery pain clinic. It turns out to be a pharmacist! Not at all what I imagined. She thought it would be a good idea to reduce my meds for 4 weeks due to side effects to see if they decreased. On Gabapentin only for the fibro so no other pain meds to help. So I went through a fair bit of pain for a month and then decided that it wasn’t worth the sleepless nights. I had an appointment last Friday to understand date them but I had to cancel. I’m not sure it’s worth bothering but I will give it one more go. I’m not sure if they just want to get the drugs budget down. I also mentioned another medication instead of Gabapentin and she said she wouldn’t put me straight on that. I’ve been on Gabapentin for a couple of years! Hmmm. I know other people get better treatment than me at hospitals so I’m not sure what’s going on here. 
    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? 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I don't suffer fibro myself so this is purely logical.

    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
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Really helpful thanks TK. Yes I have sciatica and that’s the area where the physio focussed. The physio seems to imply that being more active and building up my stamina in general will help me deal with chronic pain. Knowing nothing about fibromyalgia she doesn’t understand that after physio and my part time job I completely crash and almost cannot walk home as it happens. She obviously assumes thats poor fitness levels whilst not understanding that’s fibro crash. I had to increase my meds during the physio period after trying to decrease them not very successful for a month. So the pain was worse during the physio period. Of course there will be some aches due to physical exercises but not to the point where you can’t move with pain all over. Personally I think hydrotherapy with warm water would benefit fibromyalgia symptoms as I respond better to heat than cold. That’s not on offer here. 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • [Deleted User][Deleted User] Posts: 0 Listener
    The best thing that helps me is floatation tanks and i also feel magnesium is good
  • [Deleted User][Deleted User] Posts: 0 Listener
    debbiedo49
    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
  • [Deleted User][Deleted User] Posts: 0 Listener
    I would be interested to know what other fibro sufferers feel about being told to pace yourself when in a fibro crash...i feel well meaning practitioners/non fibro sufferers seem to think you can overide a crash? They miss a vital understanding that fibro is not just pain.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I work part time which is for about 2 hours Monday to Friday. I walk the short distance there and back which is about 1.5 miles plus depending on what else I’m doing. I had to practise walking there and back several times in advance to overcome my anxiety anc build up confidence in my stamina as I was virtually housebound with agorophobia for 8 years. I have had CBT for this which helped a little. Going outside and having anxiety and having fibro is a big thing for me and probably planned like a military operation lol. I have to know the route and where I can stop if I have to to relax or catch my breathe of rest. My journeys are in stages that I can manage. I have strong leg muscles, but not s good breathing techniques as I get anxious and shallow breath. I couldn’t do any of this walking without the meds to help with the pain. I literally collapse on the sofa when I get home for the mental and physical effort going out and walking has on me and crash is the best word to describe it. Within half an hour to an hour I’m off to bed for a nap to rest my body and mind so that I can cope with the rest of the day and week. 
    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 am a fibro warrior !💜♏️
  • gelder33gelder33 Member Posts: 16 Connected
    Hi my name is tony, i have chronic pain due to surgey on my spine going wrong, I was the unlucky one in every 3000 people! After four more operations I am in very severe pain and they damaged my right side main nerve causing extremely painfull spasms, I can only sit in my wheelchair for ten mins at a time etc etc.
    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?
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    That sounds really good and it's working for you. Yes I very much felt the NHS physio was a box ticking exercise. Do you know they send out a text reminding you to attend your appointment as it costs the NHS 125 pounds? I know that is because some people don't turn up or cancel but I think it's a bit cheeky. There's a big difference between what you pay and what NHS costs. It's a shame as the therapist was lovely. I find it really hard to get on with new people due to my anxiety and she made it easier for me. But at end of day she booted me.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • Caroline16Caroline16 Member Posts: 10 Connected
    Hi everyone 
    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 🧡
  • [Deleted User][Deleted User] Posts: 0 Listener
    Hi Caroline
    so glad to hear that you had a good experience and that you feeling benefit....long may it continue x
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Recently was referred to my gp physio, a new thing. I'm having musclespasms in my neck and shoulder past month. I was given exercises to do and told to carry on with over the counter pain meds. These haven't been helping so far. I then made g p appointment and was given more advice about pain meds and encouraged to get steroid injections. The g p who does these is on holiday for two weeks and only they do them. So I'm having to push through until then. I feel physio just works on non medical intervention and doesn't take into account how painful it it with fibro.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    My pain has got so bad waiting on this appointment sometimes I feel like banging my head against a brick wall to feel something different. I know that sounds bad and I wouldn’t do it but it gets desperate. I went to hairdressers at weekend which I had put off and put off. After getting my hair washed I started to feel light headed with my head being backwards for that. Then I felt okay. During my haircut o started to feel the muscle spasm again and I was feeling light headed and sick. I was nearly done so carried on. I barely made it home before I had a full blown migraine triggered by pain. This sucks big time. I’m told steroid injections can help. Was wondering if others had suggestions please? Thanks 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
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