Bechet’ s and leg/foot pain

I have just been in the hospital with bad left leg and foot pain which I have had for a while. My Dr wanted me to go into rehab which I didn’t think was the way to go about it. Still upset about the situation.

[Ovidia]

Yes, that sounds similar as i have constant EXTREME feet and leg pain, that worsens from doing any normal exercising with weight on my feet especially. My nerves are just way too easily inflammatory!!!

I have had physical thearapy suggested by my Dr as well, but the out come was just more PAIN and NO "GAIN"!!! My nervous System responds to any new "excersise" as an assault on that part of my nervous system and gives back an all out inflammatory punch back or injury causing more damage to those nerves involved. So all i can do is my passive yoga, stretching and breathing exercises, all off my feet!!! Those really help me hold on to what strength and normalcy of functioning i have left. Just listen to your body. I'm 60 years old now in January, and have had my entire life to study and recognise my Behcet's disease nervous system reactions. This is Something some Drs just can't understand. But there are now, very thankfully, more Drs finally, that do understand the mechanism for nerve damage from Behcet's disease.

I have to Stretch and move and "excersise" in ways that are uniquely comfortable to me.

This is what I've painfully learned. I used to be in gymnastics in highschool, ran two miles every morning and had an excersise routine that was pretty normal. But then, my exercising began to make me feel very sick for days after. And became mor frequent in the attacks... And those times of excersise intolerance became gradually more and more frequent as i began to experience DAMAGE instead of improvements.

This was SO SO VERY DISAPOINTING, and knowbody could understand what was happening long ago when i was very young. It gradually became so damaging to excersise at all, except for my sort of self directed passive yogic type movements and breathing excersises, that i have to do laying down in bed or on a very soft surface.

I work hard at holding on to what strength i have left. It is SO depressing at times when all i can do is stay bedridden at times for weeks at a time, to reach again the best plateau of pain possible, depending on the deapth of the insult to my degenerating nervous system.

I've found that an attitude of GREATFULNESS, no matter what pain I'm in, really truly helps my survival of it all and hanging on to life no matter what!!! But it just feels too painful at times because nobody can SEE IT!!! I'd rather have constant compound fractures in my feet and legs that everybody could SEE EASILY!!!

Good luck with your physical maintenance fighting this horrible Neuro-Behcets!!!

I hope that i have helped a little and not been to long winded in sharing my thoughts and experience.

I won't go in to the gasteoparisis or other aspects of my Behcet's disease here today. Feeling pretty exhosted enough!!! LOL!!!

Love n hugs to you all out there!!!💜

[Hidden in reply to Ovidia]

Sam I was a swimmer and soccer player and was traveling the world had to come home. Years to find out what it was then specialist told me in 5 mins what it was. Just spent another week having arguments with doctor about it all just came home!! Thanks for your help!!

[lesleyg in reply to Ovidia]

Hi Ovidia, I was 61 in May and can empathise so much with what you are saying. Lesley

[gillianTS]

Hi Belinda1975

I have foot and ankle pains most of the time though improved from a year ago, my legs are not as bad at the moment. I use epsom salts to soak my feet and also dissolve the salts in a little water and apply a thick paste wait for abput 20 - 30 mins then wash off this seems to help with knee joints, also use aloe vera gel on feet, ankles as well as other joints. I discovered MELT balls a short while ago and attended a short class and I have to say my feet are so much better now, I don't use them as much as I should and did do, they certainly improved my shuffling around and helped with the leg pain, the art is to use little downward pressure its the best way to get relief, i use these sometimes 1-3 daily, I also occasionally use tape to stop my ankles dropping forward and sideways too much as I have Ehlers Danlos too so have a big habit of over extending like a ballet dancer... A chiropractor I used to go to for soft tissue massage, who also had Elhers Danlos, gave me a series of gentle stretches which help.

Hope you can get some relief soon.

Gillian.

[Hidden in reply to gillianTS]

Thanks so much for your help. Very frustrating sometimes!!

[gillianTS in reply to Hidden]

I forgot to mention in April 2017 I had both of my feet and ankles MRI's completed, over 3.5 hours with a break halfway through the only thing that was identified was tenosynovitis which is inflammation of a tendon and its sheath, because I also have Ehlers Danlos it is thought this is a large contributor to my problem with tendons and ligaments issues. I do try and exercise my ankles too, strengthening the arches but this is prone to set backs as I simply seem to agitate the area, it's best to do little movements little and often I do tend to do the opposite... I went to see a musculoskeletal podiatrist who also gave me shoe inserts and advised me to do balance exercises I was amazed how rubbish I was at standing on one leg let alone with my eyes closed tjis was a big thing for me az it's so important balance is improved in later life my mother has balance issues and prone to falls. The physiotherapist I eventually got to see was really great too she made me aware of my stance I had no idea I stood and walked with my shoulders forward and my bottom slightly pushed out she told me to look in the mirror and practice standing taller bringing my chest forward and my bottom in, I must have grown a couple of inches I think I take on this old posture when I'm uncomfortable but I try to rectify it every time I find myself doing this.

Hope you can get relief soon.

Gillian

[Hidden in reply to gillianTS]

Sounds like you are in a lot of pain that not many people realise.Just want to get it sorted soon!! Thanks so much

[Hidden in reply to gillianTS]

Ending up at the physio again on Monday hoping they are treating the correct reason for it this time!!

[Claz34]

I have horrible foot and ankle pain and it’s been going on for over a year and seems to be getting worse. I’m on the verge of quitting my job because the pain is so bad.

[Hidden]

Hi I'm in tears writing this my feet and legs to my knees are in so much pain , cannot put any pressure on them , feels like someone has hit them with a hammer , told my consultant they have put steroids up to 60mg again!! And gave me oramorph , if anyone has got any suggestions would be a great help.

Sending love to everyone .

[Hidden in reply to Hidden]

Same very painful especially left/leg and foot with a lot of sharp pain and tingling. Hope to try some of these creams. Hope all feeling okay with all this pain!!🌺

[Hidden in reply to Hidden]

You poor thing; Lucky to go up on your prednisone. Can’t do that any more!!

[lesleyg]

I can identify with most of the comments above! Heat helps me a lot. I’m currently resting in bed with the soles of my feet pressed up against a firm pillow and over me I have an electric throw blanket. A couple of years ago someone put up a post that her neurologist recommended this type of electric blanket as the heat gets into the bones and muscles. Once the blanket is turned off I’ve been known to put a feather pillow over my feet and ankles. It’s an odd therapy but it works for me! Lesley

[Hidden in reply to lesleyg]

Thanks so much; any help is greatly appreciated at this point!!

[lesleyg in reply to Hidden]

Hi Belinda a doctor told me to try and rest with my legs and feet higher than my hips - it definitely helps. If I’m sitting I try and put my feet on a footstool- again it definitely makes a difference. Cheers Lesley

[lesleyg]

Me again - sorry but I keep remembering tips that were given to me. If you are really desperate obtain a pair of surgical knee hi stockings (or I imagine the full stockings would be ok as well. I was told to have my shower in the afternoon or evening and put the stockings/pantihose on before getting out of bed. This was to stop the swelling and aching and told to me by a female specialist at RPA hospital in Sydney. I did find it a bit of a nuisance re changing my routine with the shower and getting half dressed before getting out of bed, but it would depend how bad your legs are aching. Sometimes the simplest of changes to a routine can be very helpful. Also, I find standing in one spot is actually worse for me than walking around. My neurologist said that it could mean something different, so take note of when your legs ache the worst.

Lesley

[Hidden in reply to lesleyg]

Thanks again for all this help!! I will try anything I’am sure everyone thinks I have exaggerated the whole leg/foot pain!!

[lesleyg in reply to Hidden]

It’s no exaggeration!

[Hidden in reply to lesleyg]

Thanks!!

[Hidden in reply to lesleyg]

What specialist do you see in Sydney if you don’t mind me asking!!

[lesleyg]

With Behçet’s one tends to see a range of specialists, sometimes it seems like one for every body system! My main specialist and the one that has been the most helpful by far is Professor Dominic Rowe at Macquarie University Hospital. The initial consultation is fairly expensive but worth every cent. Hope that helps. Cheers Lesley

[Hidden in reply to lesleyg]

Thanks so much will have to look into that!!💐

[Hidden in reply to lesleyg]

Do you think he would mind if I sent him a email; Don’t know what else to do and my doctor is starting to stress about the whole thing. Not his fault he has been good to me.

[lesleyg in reply to Hidden]

Let’s go to messaging and I’ll talk to you 😊

[lesleyg]

I forgot to say he is a neurologist, but in my humble opinion a very good all rounder

[lesleyg]

Let me know how you go. Private Message me if you like. 🤕🐨

[Hidden in reply to lesleyg]

Will do thanks so much; Private message yeh!!! Knew someone else would have to know about this disease here!!!🌸Kind of had seizures anyway haven’t seen anyone for over a year!!!

[lesleyg]

By messaging I mean chat

[Hidden in reply to lesleyg]

Yeh; Need to chat would be great!!

[Hidden in reply to lesleyg]

I just sent him s message now couldn’t wait until tomorrow.Hope he will help!! Hope you still want to do that chat.

[lesleyg in reply to Hidden]

Hi Belinda I’ve started a chat but it is pretty late so will answer any messages tomorrow.

[Hidden in reply to lesleyg]

How do you do live chat!!

[Hidden in reply to lesleyg]

I haven’t heard from that specialist hope I will sometime soon.

[lesleyg]

Go to Home and Messages or Chat should come up along bottom of page. Open up messages and there should be a message to you from me. It is not necessarily live chat - answers could be hours apart - just depends, L

[Hidden in reply to lesleyg]

Getting used to this; Ended up having to try to speak to my doctor to try to get something for it all!!

[lesleyg]

I think that is the better option. Most doctors don’t like to comment on patients they haven’t seen. Being an ex secretary it doesn’t take much to think of the legal implications, lol.

[gillianTS]

Hi I have come back to the thread because I have been trying CBD balm on my ankles 2 to 3 times a day for the last week and I have noticed a difference in the swelling and pain, it is only 1% CBD so I will be ordering maybe the 2 or 3% next time, it's quite expensive and I use it sparingly it's made by Pharma hemp I will be considering buying direct next time, lots of others makes of balm too.

Hope you are getting some relief.

Gillian

[Hidden in reply to gillianTS]

Thanks for your help might have to try it!!🌸