Physiotherapy

[OmorfaOneira]

Did anyone else find seeing a physiotherapist for the pain a bit useless?

I had an appointment with one recently and he pretty much talked over me the whole 20 minutes I was there. He said to just keep exercising as much as I can but when I do move around I risk getting pain and fatigue.

He also said to try and come off my prescription medication that helps me sleep deeper. Again with my chronic fatigue I need that restful sleep and I can't get it without medication (I've always been a light sleeper my whole life!)

He did some simple physical tests and he didn't really find anything useful/I don't know about my body. I genuinely think he doesn't believe Fibromyalgia exists hence why he was so dismissive of my concerns.

I came in with low HRV and high resting heart rate (than my usual range) and I was concerned about it not going back to normal for almost a week. He didn't even comment on it and just talked about eating healthier and exercising. It's so frustrating, I feel like I became even more invisible to healthcare providers after my diagnosis. Sigh

[Africanmonkey]

Hi there, I know exactly what you mean. I have seen so many phyisios and not 1 seems to know much about fibromiagia. I would be better seeing a chiropractor on my back but I have to pay for it and I can't afford it. They all just print off a pile of papers with exercises on and say just do these exercises and I will see you later.I have not got any better yet and have to see 1 on Thursday again for a so called trapped nerve.

[CWLL]

Yes I have, a few times, to be honest, just made things worse. Everything I've tried and I have tried a lot seems to do nothing or make things worse. That's not to say, others might have a positive out come.

[Flowerinbloom]

I went once after being referred from orthopaedic’s and left in tears. Was pretty much told I had to push through the pain and the reason I had joint pains etc was that I didn’t move enough, I have rheumatoid arthritis as well as fibromyalgia and days after this appointment had a heart attack and needed heart surgery.

I get told constantly that I ‘look’ fine or ‘don’t’ look ill which I suppose is a compliment but because I wash my hair I try to look half decent doesn’t take away the pain or daily battles I have!

[OmorfaOneira in reply to Flowerinbloom]

I feel you on being told that I look 'fine' or 'not ill' like able-bodied people don't really understand that most of the time we mask our pain and fatigue so people don't ask questions or comment on how I look when I'm in a lot of pain and it's visible in my face/how I move.

Sorry to hear about what happened after your appointment, they really are so stressful and they usually send me in a fibro flare

[Kitten-kat23]

Yes.

[Cat00]

I think exercise is the best thing for fibromyalgia and injury and pain made by that exercise can be helped by a physio. But if you have chronic fatigue I don't see how exercise is possible for you, it's my understanding that exercise can make you worse, inwhich case I don't see how a physio can help?You would have hoped they might have given you a set of stretches atleast that might be good for you....

[OmorfaOneira in reply to Cat00]

yeah I was hoping I could get advice on how to move without further exacerbating my symptoms during a flare but instead I was just told to keep moving when I'm not hurting and to rest but still move when I can when I'm flaring. It really is such a delicate balance and negotiating whether I want to risk being in pain or being fatigued

[Cat00 in reply to OmorfaOneira]

I would have thought suggesting something like using a Recumbent bicycle might be good? They're great for low level movement and because you can sit back in them with a supported back they're good if you're really tired but just need to move a bit so you don't get too stiff? Swimming is good but I think maybe too much for chronic fatigue, although it gets you out and if they have jacuzzi or steam room, that's good for the soul!

[Dreamgreen]

Hello OmorfaOneira,

Sorry to hear about your experience with the physiotherapist.

I've not been to see a physiotherapist, though was referred to an occupational therapist who specialises in Fybromyralgia at the pain clinic at our local hospital.

It was a more holistic approach to managing the pain levels & fatigue & I've found it helped a lot as she knew what she was talking about.

I was referred through my doctors. I'm not sure if you have anything like this in the area you live, but might be worth asking your GP.

Sending gentle hugs🤗

[OmorfaOneira in reply to Dreamgreen]

I've booked myself in with a pain clinic so hopefully I can get some practical/useful advice!

[MrsMouseSJ]

Unfortunately, this was pretty much my experience too. I have seen a few physios over the past decade and I have been struck by their lack of knowledge about chronic fatigue and post exertional malaise. And by their lack of curiosity or desire to learn from patients' experiences. I now only see a physio if there's a distinct issue in one area of the body which is not resolving. For general strengthening exercises I have been working my sister - I am very fortunate that she is now a qualified personal trainer and understands and respects my limits. She has given me several exercises which have been very used, particularly as I am controlling the frequency, etc.

[OmorfaOneira in reply to MrsMouseSJ]

that sounds amazing! I have a personal trainer that specialises with people that have chronic conditions but unfortunately I've been flaring up a lot that I haven't been able to attend my sessions or do my "homework" workout routines that he's assigned to me. I'm going to a pain clinic soon and he said to keep him posted so hopefully I can find an exercise routine that works for me without exacerbating my symptoms 🙏

[MrsMouseSJ in reply to OmorfaOneira]

I hope it works out well for you!

[Briecheese]

The only good physio I saw was privately and she fully understood that too much manipulation, exercise etc can make things worse. I have found massage by her was more helpful than any exercise. The ones attached to my GP surgery I find useless and are only paying lip service to any referral they get from GPS who don't have much knowledge of fms. One good gp said I knew better than him about fms so he was led by me. Which really meant I was on my own but helpful in him not pushing me for medication I did not wish to take and allowing me to manage my meds as to what was best for me.

[OmorfaOneira in reply to Briecheese]

I found massages super helpful too! both to just relax and also help with the pain. It does get expensive so I don't get it as often as I need, I try to get one once a month when I can.

[Ellenindigo]

Yep. Free daily Pilates lessons on YouTube have, however, been a game changer.

[Yassytina FMA UK Volunteer]

Hello, just read your post and it seems all too familiar about printing out papers with excercises on , lectures on eating healthy but when I’ve been too see a Physio I’ve not really received hands on Manual Physio too help , I am due in 3 weeks too see one so I’m not expecting any different approach , i remember years ago getting hands on Physio but when I ve been Private or NHS that dosent seem too happen .Like you I have CFS so it’s hard when juggling both that and Fibro . Xx

[alfalb]

Hi

They're useless regarding pain and fatigue. And he shouldn't be worry about your medication. It isn't is job.

But when you see a fibromyalgia doctor that supposed that he's the best in the UK and at the end of consultation ask, "do you want to change your medication" that shows what you need to see - useless.

Physiotherapy never helped me with pain and tiredness. Every time I did it I'd stay with more pain and some days to recover.

All the best to you.

AS

[Dinkie]

try a referral to one of the fibro clinics - at least their physios understand fibro and won’t fob you off!

[Alecinthesun]

Sounds a bit like medical gaslighting. I find using a warm pool, to do hydrotherapy and a gentle swim really helps, it's non weight bearing and helps to soothe the central system, l love to do this late in the evening, I eat once in the middle of the day and do hydro exercises from 6-8pm and then I sleep like a baby, warmth through a jacuzzi, steam room or sauna really helps me sleep well, as well as Magnesium, maybe a Magnesium salt bath, nice and warm if you can't access a jacuzzi etc. Also stretching and tai chi is great, NHS physios, unless they are part of a specialist unit are rubbish for fibro stuff.