[AmandaB]

Hi All,

in my quest to get well and improve how I feel, I was wondering - has anyone actually been referred for proper full on physio to help them? What I mean is, I've been trying very hard to go to the gym to improve my fitness levels and lose some weight but have struggled due to the breathing problems I have (shrinking lung syndrome, pulmonary embolism, mitral valve reguritation all adding to the issue!)

Just wondering if it's a path worth trekking?

Amanda

 

[Katharine]

Hello,

Yes, indeed I have! I also have myositis involvement and physio is very important for that.

Unfortunately my experience won't help you much as the physio I'm doing is currently only available in French speaking countries (it's beginning to appear in Canada) as it was developed by a French man. Basically it is truly Global physio that works on the entire body. It is the only physio I have ever found effective (it's usually prescribed for back problems) and also the only one that doesn't push my body where it can't go.

Here's a link that explains what it is

http://www.fisioclinic.com/public/s...al_Postural_Reeducation - Emiliano Grossi.pdf

I'm afraid the article has been rather badly translated so please excuse its oddities - I am not the translator :lol:

At least it might help you in your search for a more global approach. I'm sure that many "good" physios can work on a more global approach when they know what they're working towards. My physio has a few fibromyalgia sufferers as patients and she besically works with me in the same way and that approach means that she doesn't "hurt" me or expect too much. I would stay away from a physio who works mainly on sports injuries.

Katharine

 

[Maia]

I have done official physio in a very warm water pool for H20 therapy. It is a slight workout, and the warm water feels good and is easy on the joints. I enjoyed it while I was doing it - it was just too much work/time for me to continue through the cold winter months here. However, I would recommend pursuing it as well.

 

[greenhaggis]

Hi Amanda,

I,ve just recenelty undergone 1x45min assenssement of health issues and 1 hour of physical assessment and general NHS physio are unwilling to treat at my hospital incase they put me in a worse flare.

Now been officially referred to Chronic Pain Clinic, but in meantime have been suplied with a tens unit hope your find some form of relief soon.

Lesley

 

[sjink]

Hi Amanda

My rheumy referred me to physio (all on NHS) and they did a full assessment. They offered a nutritional assessment as well but I know I eat well, I just eat a bit too much some days

Outcome of physio was that I was told I should only do gentle cycling or walking, no weight training etc recommended. I use an exercise bike but can't say I use it every day or sometimes more than once a week.

The physio did some laser treatment and acupuncture on my very painful feet which really helped, but the course was time limited and I hope to get referred back again soon. They were very good, it is a training hospital and the girl I saw was in the last period of training and really interested in Lupus and Sjogrens and very supportive.

I remember being told not to carry on any exercise if it hurt... no going for the burn lupus does not respond well to being pushed. Something about cytokines (spelling?) and muscles (I understood it at the time).

I felt going was worth it, they have a lot more tricks up their sleeves than just giving you exercises.

Sara
x

 

[wheeliefab]

Hello I told my GP I'd like to try Hydrotherapy as gentle exercise is recommended for lupus yet I find normal swimming pools too cold water, also I've found it hard to motivate self to do any exercise regularly, and when I have tried swimming on my own I've overdone it and been very tired & achey for several days after it.
My GP referred me to physio with no problems as she said it sounded like a good idea. I had to wait about 6 months before I saw physio for assessment to see what would be the most suitable for me
- they asked why I'd gone to see them and why I thought hydrotherapy would be good for me & what did I expect as an outcome.
I just explained about how I needed graded gentle exercise as there is research to show that regular exercise carried out long term can help the levels of fatigue experienced in people with lupus & fibromyalgia (it will however probably make you feel more tired at first as you get used to it) and that everyone seems to say try gentle exercise to help your lupus.
I also explained the problems I'd had when trying exercising on my own, and that although I knew it would not cure my lupus I want to remain as healthy/fit as I can be.
Anyway physio accepted all this and referred my for the hydrotherapy. They also gave me tips on improving my posture to help with fibromyalgic/muscle pain I get in my shoulders.
So far I've had 2 hydrotherapy sessions held in a small meter deep pool of warm water. I just did really gentle movements under supervision and rested for the next couple of days. I ached slightly more than usual after it and was a bit more fatigued but I do think it's worth putting up with that if in the long run it helps me stay as fit as I can be
I think normally they only give you 6 hydrotherapy sessions in total but I'm going to try to see if I can continue it for longer/permanently if that is allowed. My sessions start again in Sept (they take a summer break as sessions are held in a special needs school that is closed for holidays) so over the summer I'm going to try and find a public pool that has water warm enough for me to try the exercises on my own, and I'm also looking into costs of gym membership to see if private gyms with a pool have water that is any warmer than public swimming baths. I'm even considering saving up to get a big hot tub/exercise pool I could have fitted in my garden but as I'm on a low income I don't expect I'll be able to afford that luxury

 

[AmandaB]

Hi All,

Thanks for the advice, much appreciated.

Katherine - I will have a look into that link (I promise to remember that you didn't translate it!)

Wheeliefab - thank you too for the info. Just as an exchange of info, when you look into the gym membership, ask if they provide a low cost solution for those reffered by the GP - some gyms offer a 10 week course and discounted membership on the basis of special requirements and the fact that you aren't able to use all the facilities.

Amanda

 

[carol5]

hi amanda,
i was referred to my physio who tried a few things one was acupuncture which i reacted badly to another was hnds on massage wich i was too sensitive for so she deemed me untreatable!!! however she then let me try a tens machine which i now have on loan for a couple of months it is £80 to buy but if it works then hey, the jury'sstill out as to how much it helps but i think its doing some good but will know more in few weeks, hydro sounds good though, think i will ask for a referral thanks
carol x

 

[Raglet]

I have been seeing the same physio for 15 years - I go on an as needed basis (which works out quite a lot!).

I have also seen physio's at the hospital gym, and currently go to the gym at the local Y which I prefer to the hospital gym. My trainer is the guy who does the oldies class/ stroke recovery etc, so he knows a lot about disability and modifying exercise.

If you are looking at starting an exercise programme, in my experience the main thing to do is to shedule it in advance, decide when you are going to do it then do it.

Unless I know exactly when I am going to do it (like 8am Tuesday morning, for example) then I never get around to it.

hth

raglet