Physio

[Papapickle]

Hi

Long time no post.

So here it is.

Been suffering terrible burning in my joints recently and a crunching in my neck when rotating my head.

Healthcare (uk Bupa) want to send me to physio.

Does this sound right?

Take care

Chris

[gillianTS]

Is the flesh around your joints swollen, do you have any visible inflammation, are they hotter than the rest of the area around your joints? Have you tried gentle neck stretching exercises and the same for the rest of your body, nothing over the top, to see if this helps. If you have joint inflammation then seeing a GP might be helpful to try and get an understanding why they are inflamed and treatment. I do not think a physio is right if you have inflammation but they could help you to discover why you have got joint pain, and neck crunching, and suggest how you can help yourself improve this, I would go to see them just to see what they have to say to you.

I was given gentle stretching exercises to do by physio and chiropractor, who I used to see for soft tissue massage, when my joints and body ceased up and I could hardly move, I told them both I felt it was going to be impossible to do these exercises but I was proved wrong, no matter how bad my body is feeling doing a series of head to toe gentle stretching helps me lots 😊 I have EDS too so not able to do huge stretches.

Hope you can get some relief and answers soon.

[Papapickle in reply to gillianTS]

Yes there is visible inflammation.... will hold off physio and see gp I think. Thanks for advice. Hope you are ok.

Take care

C

[Blearyeyed in reply to Papapickle]

I would definitely have the joints checked and discuss wether you should begin physio with your Rheumatologist or GP , especially as you do not know the type of inflammation you have and wether exercise would benefit or harm it.

You also need them to make sure that the Physio you are sent to is a specialised rheumatology physiotherapist , preferably one with knowledge of autoinflammatory and Autoimmune diseases / Behcets .

Then , if they agree if this is a good plan , ask if they will write a letter for you to give to the rheumy physio to read at the initial assessment you get before any exercises should begin ( or they can send it directly) .

If you are not sent an assessment appointment first , but just given an appointment of when to begin physio , you need to call them and ask for a proper assessment first to discuss your illness with the physio .

Show them what joints hurt most and what triggers the pain and work out together what type of exercises you should be doing.

Too many of us have be sent to physio without assessment and just given bog standard one size fits all exercises from someone with no knowledge of these types of disease and paid the price and been put off.

Physiotherapy can be beneficial if the right exercises are done , not just for the pain but to reduce the effects that steroids have on our muscle strength and laxity.

But exercises need to be specific to our symptoms , our needs , and, the ability we start from.

And not just our Behcets symptoms should be considered but also other conditions we might have too , especially if they are joint / nerve related issues like arthritis , Fibro etc.

When you do start you need to do so slowly , especially if you are not used to doing similar exercises.

You should not start with a long session and repeats of exercises should be built up slowly with chance of a rest in between exercises and a good drink of water.

The inflammatory nature of Behcets means keeping hydrated is essential during exercise to prevent a flare.

If your physio does not build you up gradually and build in new exercises slowly you need a different physio because they don't really understand your illness.

For diseases like this physio is not a quick fix and a single set of sessions then being sent home isn't enough. Work needs to be built up over months for as long as you need .

Healthcare groups don't realise this believing a set of six weeks of physio will do the job , and they hope it will save them costs in time , they get a shock when they realise it is actually a more long term expense , but it is one that could benefit you.

A good drink both before and afterwards is important and a warm shower as soon as possible after any exercise ( or at least washing genital areas and sensitive skin ) will help prevent ulcers as a side effect.

Cooling down movements afterwards and light stretching before exercise , at home or for physio , is advisable.

Having a good rest ( a few hours relaxation or a nap and then a quiet night not one full of chores or socialising) before and after exercise will also reduce exercise related Fatigue.

If you find your joints burn from exercising use well covered ice packs or cool water circulated with a shower head but not for more than 10 minutes .

Eating lighter meals around physio sessions help .

Building up vitamins and minerals in your diet before starting exercise regularly will help prepare your body to cope with the effects of new activity in the muscles and joints.

Get your Rheumys recommendation about wether you should take medication like a pain killer or anti inflammatory before sessions to prevent side effects.

It is worth trying , and can be beneficial in general , although it may take time to show some effect on the pain , or , you may have the occasional side effect or increase in pain for a day or two when you begin.

But if the side effects or increase in pain is too much , for too long or uncontrollable , tell your physio and Rheumy and see if you should stop or some other exercise option is available to you.

Hope this helps you make a decision that will work for you , take care x