Physio and Behcet's: Hi everyone, I am... - Behçet's UK

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Physio and Behcet's

behcetshurtsbeyondwords profile image

Hi everyone,

I am wondering if anyone with bad joint inflammation and pain has tried phsyiotherapy, and whether or not it helped with joint mobility?

I have been suffering from severe arthritis now for the past year, without any breaks. Because of this bad flare I've been stuck in, I have basically become bed-ridden now. I try my best to still be able to walk and move around, but it is becomming increasingly difficult. I also have bad swelling around psiatic nerve and sometimes the pain is so intense and piercing that I can barely even take two steps.

I know that phsyio will not cure the pain or inflammation, but I am thinking and hoping that maybe it will help my muscles regain a bit of strength and keep my joints more flexible. I once was a very energetic and active person, and now because of this disease, I can't even take my dogs for a short walk around the block. I know that I really need to find a medication or a medication "cocktail" that will help to settle the swelling and then hopefully lessen the pain; but I know that in the meantime I still need to remain as mobile as I can, even if it hurts me more-- Sigh.... I feel like if only it were possible to just slough off my Behcet's body and run far, far away from it-- then I could just move as freely as I wish!

Also-- I've been thinking about swimming and aqua exercise as an alternative to normal exercising-- has anyone found that this is much easier to deal with even with overwhelming fatigue, swelling, and pain?

Thanks,

-Jenna

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13 Replies
slappy profile image
slappy

I am in the same boat!

I was put on azathioprine last year feb which is a powerful drug helps joints muscles etc but i ended up stopping it as me and the mrs wanted another baby as drug we think caused miscarriage we had ;-(

I am on 10-15mg steriods each day,bone tablet 70mgs each week for illness and lately my joints fingers back have been killing!

Unsure if this happens to rest of us but due to having chemo in 2005 and steriods i pick every bug cold,flu going around and hits me for six!

I was taken alot pain killers drugs but how many of us WANT to keep taking drugs 24/7?

Im only 33 and i really do feel it nowadays,I am engineer by trade,aircraft,fabricator not been into it since 2005 due to doctors and illness controlling my life.

Swimming did help me and funny enough we ve been talking about taking our nr 4yr old son more swimming but my mrs is due april.

Go see your doctors about azathioprine tho,My doctor is in bristol uk as like in sunny weston super mare,But all my main doctors are london!!

Keep your chin up and take care

regards james W

bailey23 profile image
bailey23

Hi

Saw my Consultant at the Mineral Hospital in Bath yesterday and she has recommended Pilates to aid my aches and pains. I think swimming is ok but be careful you dont do too much as this will only exacerbate your problems. Good luck though and hopefully they will sort out your meds soon. I am on Steroids and Methotrexate and find I am relatively well on it.

Hugs

Angela

x

slappy profile image
slappy in reply to bailey23

Have you been to the bri Angela and seen dr marshall by any chance??

thats who i am under there now!

I did pilates at weston general but i was waking in middle of the night with magor pain,Like spasms and decided to leave them alone,Saying that i had a back problem and due to our illness found it harder to sort out!

What is methootrexate like i did hear about that,

all best

james

andreafm profile image
andreafm

I find gental strecthing helps a lot with pain and doesn't aggrovate the spasm/spasticity too much if you take it easy and build up.

I have a DVD for people with Chronic Fatigue Syndrome and the stretches can be done sitting, laying and standing and are very helpful.....I also found a book for exercises in your bed, which are also very good.....Once you have mastered these you could move onto something more. I do some targeted yoga positions which stretch the spine and engaged the core muscles, but only do these when I can.

I was sent to physiotheraphy session but they only gave me 6 sessions and the physion couldn't understand that more is less with my problems and tried graded exercise, which made me worse. I also tried their aqua exercises which I found felt great at the time but as Angela says it came back to bite me in the bum later in the day.....so working at your own pace is imperative.

Andrea

bailey23 profile image
bailey23

Hi James

No Ilive in Wiltshire and have been under The Mineral for years. They are really good as they are a specialist Rheumatoid Hospital. It was there as an In-patient that I got my diagnosis. I am under a Professor McHugh but saw one of his registrars yesterday. They are very good.

Methotrexate suits me, the only side affect I get is a headache the day after taking it. I can put up with that. It affects people in very different ways though. My mum takes it and she now has to inject it as she gets very nauseus and sick on it. I would consider it though as it keeps me on a relatively even keel with mini flare up but ones I can cope with. But if I do too much I flare up big time. I have learnt to take things easy (not easy) but worth it.

Take care

Angela

kenjay profile image
kenjay

Hi, I found swimming extremely good, just as long as you don't overdo it. gentle swimming, even just moving arms or legs while floating is good to, because there is no weight bearing on joints while doing this. I also found hot stone massage very good. If your joints are too painful for this, some places have hot stone beds, which you just lie on. I have been told that these too are fabulous

amietamant profile image
amietamant

Exercises that strengthen the muscles around your joints can be helpful because these muscles tend to get weak when your arthritis worsens and you avoid using the joint.

picklepops profile image
picklepops

Hi there

I have acupuncture at Physio which I have found helps.

I also do aqua exercise at my local pool which is great as it doesn't put too much pressure on the joints. On days I don't do the exercise I swim.

I have an aromatherepy massage once a fortnight with reflexology too.

Other than that I have my pain meds and pain plasters.

I am on colchacine and azathiaprine and the 3 part mouthwash made up with steroid, doxycline and nystatin.

I am trying to get as fit as I can to deal with this BD!

Sharon x

Thanks everyone for your input :)

I think the biggest thing is gettin started with some sort of exercise regime or stretching regime. I know it's going to be really rough at first because its been a very long time that I've been nearly immobile for. I think too I fear that I just wont have enough energy to do anything, and that I'll end up even worse off. But I know that every body needs some form of exercise, even arthirtic joints, otherwise it just causes more problems. I just wish that I was able to just get up and go like I once could-- I am sure that most of you feel this way too!

lesleyg profile image
lesleyg

Have to agree with you. When people say they swim so many kms or as one guy on another forum said he dances at a nightclub which helps, I cringe because my poor legs and feet will hardly carry me across the kitchen. I'm down to making sure every trip to a part of the house counts - multitasking.

Cheers

Lesley

Jazzy21 profile image
Jazzy21

Hello I have hydrotherapy weekly and I find this keeps me mobile.

I was going to suggest hydrotherapy. Generally the water is warmer than in public swimming pools and you are guided through appropriate exercises by a physio so that you don't do too much but do what is right for your needs.

lisamorris94 profile image
lisamorris94

I had physio and hydrotherapy at the same time about a year ago, I would attend a physio class once a week and a hydrotherapy class once a week this lasted about 10 weeks. I found the both classes together helped me a lot, it gave me a start to being active again. Since then I have managed to keep up regular light exercise, some days I only manage a few stretches or 5 mins on the exercise bike but other days I manage more.

I would recommend it to anyone struggling with joint pain/ muscle ache/ fatigue, it really helps! x

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