hi all i havent been on for a while flare of bd i am seeing an occ therapist friday regarding crutches as i cannot walk properly due to pain

[scruffy1]

in feet ankles knees etc all swollen and very painful some one told me the elbow crutches are best but i am wondering as i have pain in my shoulders and hands what are the options and has anyone been in the same boat and what was the outcome i am on 600mgs of lyrica and i am on 1000mgs of napraxopen daily and infliximab infusions monthly the docs are saying i have nerve damage in the legs any advice or help would be great

thanks

chris

[billi]

Hi just to say I couldn't walk outside my house for about 10 months in my 8 th year of BD. My children had to help me wash, dress and get downstairs. I trained my dog to fetch things, close doors etc. eventually I started to get stronger and took little walks then further and further. Now about 18 years later and with a diagnosis I find all my joints, arms and legs getting worse again. I know this isn't too helpful, more to let you know it doesn't last forever.

Hope you get some more useful answers and the flare doses t last too long.

Hugs

Billi

[scruffy1 in reply to billi]

hi billi sorry to hear that i feel your pain everyday with this curse is a struggle i will keep fighting and see where the journey ends hope you feel better soon,chris

[Hidden]

Hi Chris,

I am having problems walking due to pain in my hips, back, groin and more recently my knees. Also have problems with my wrists, thumbs and right shoulder.

Have been using crutches for about 3 months now.

I have got comfy handle crutches, which have specially shapes hand grips.

My shoulder and wrists haven't been any more painful for using the crutches.

Hope this helps!

Clare

x x

[scruffy1 in reply to Hidden]

thanks clare yeah i have the normal crutches and i am struggling with them my feet are red raw from the pain i am like an old man not good for a 48 year old so i will ask for that type of crutch and see what happens but the soles and joints in my feet are the worst fingers crossed that the new crutches work,

regards chris

[sweet1]

Hi Chris

Like Clair, i use comfy handle crutches.

Debbee

X

[scruffy1 in reply to sweet1]

thanks debbee i will try anything at this stage i think that B D is evolving when you sort one thing another appears,regards chris

[goodlife in reply to scruffy1]

And that Chris in a nutshell is the really frustrating part of BD! It's one thing to the next thing. I'm at my wits end with joint pain again. It's my hips/groin area...can't sit or stand without feeling like I have rats gnawing on the ball bit that fits into the hip socket ....if you know what I mean? I'm back on the oral morphine which I hate to use but nothing else touches it. I hope this flare passes soon for you Chris. Lots of love Jill xx

[scruffy1 in reply to goodlife]

hi jill i know the feeling i just got home from the hospital and i now have the elbow type crutches but they are worried about nerve damage in my feet so i am being sent to another therapist to get a wheel chair so as i am not limited to just a short crutch walk i am trying to get my head around this bombshell so it looks like bd is winning this round hope get off the morphine as i have been on it and it is not very pleasant

regards chris

[runninggirl08]

Hey scruffy..I had massive joint pain as well as other side effects while on remicade...I had to stop the drug. I completely revamped my nutrition free of all gluten, dairy and soy. All of my behcets symptoms have decreased to almost nothing..its amazing...I am off of all meds..I was where ur at a couple if years ago...just food for thought

[scruffy1]

thanks for the reply i have tried the diets alternative therapies the lot the only drug that has even put a dent in my bd is remicade/infliximab but only limited success i will keep trying everything but it looks like my bd is evolving into an even bigger monster but thanks for the info

regards chris

[goodlife in reply to scruffy1]

My first attack hit me like that Chris...I was housebound and terrible mobility and off work for 11 months...I did manage to regain almost all function. It's left me with foot drop tho which causes me to fall ...it will pass, but I know it must feel like a massive blow as I remember how amazing the infliximab was for you initially. Xx