Behcet's Syndrome Society
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Muscle Issues

Good day all. Does anyone get severe muscle pain in the legs primarily upper thighs? They ache, cramp and also harden. I am having a very hard time managing this symptom. I put heat, my husband digs in them to soften the muscles, have put salves, magenesium sprays. Any help would be appreciated.

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So i get the same issue with my right upper leg. I use CBD/THC cream and it works the best BY FAR. Hope that it is legal for you.

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You can get cbd cream?

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ya and it doesnt get you high or anything. Just removes the pain for me.

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Sweet, I’ll have to look for it. Canada is about to legalize it but I take the oil medicinally....

Thanks

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I have tried the CBD but without THC. Good idea. Let me see if I can try that.

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Oh my cbd oil has some thc...I was taking it and everything was great and then when all of these symptoms started and they put me on a bunch of different individual meds, I stopped it temporarily......I apparently need to talk to the rheumatologist to see if I can take it instead of all of these other meds. If you can though, the cbd oil is amazing! I can give you some levels to look for to relieve pain and for anxiety...I don’t know if it’s legal where you are.

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Yeh let me know. Mine is pretty weak.

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The only thing I have found that works is frankincense oil added to any body lotion and rub deeply onto your legs. I’m waiting on a spinal MRI and just had a knee ultrasound but so far that’s all that’s helped. Good luck!

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I have frankincense. Will try it. I put it on my joints and it sometimes works.

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Remember to add it to your cream, they say it’s not good to use directly on your skin. I’ve also heard arnica cream is good too and it has a cooling agent.

Good luck,

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Thanks appreciate that! I have actually been putting it directly on my skin. I didn't know that!

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So how have you been feeling? I got some arnica gel from amazon and it works well too.

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What brand did you get?

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Arnicare gel......goes on nice , not sticky at all, 75 grams.....I wished it came in a bucket...I love the stuff lol

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Yep this is what I have too.

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I bet if we put it in the fridge, it would feel nicer going on......

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I suffer from chronic potassium lows 😣. It can make your legs🕺🏽 cramp. They have not found the cause yet but blame Bechets.🤔

Try a powerade🍵 and a multi vitamin with loads of potassium and magnesium, or even a couple bananas. 🍌

It that dont help then you may want to ask the dr to check your electrolytes levels.

Please update this post if you find a remedy. 🤗

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Try tonic water before you go to bed. I was getting severe Charlie Horses and cramps in various muscles. Worked. Also, check with doctor if it could be one of your meds. Mine was cholesterol medicine by the name of Zocor. Good luck.

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Me again, my doctor just ordered an EMG study to be done on my right leg because of my complaints - it’s to help detect neuromuscular abnormalities.....apparently it involves needles which I’m not happy about but it may get to the bottom of the issue with my leg. Have you had one done yet? If not, maybe suggest it?

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Will talk to my doctor about it. He wanted me to go to rehab so over it at the moment and upset.

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Upset? How come? Did I miss something? ❤️

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Didn’t know what else to do!! His way out. Have to wait too see specialist soon!! That EMG might help.

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The EMG is one of the tests that is on the Bechet’s “tests to do list” in Canada....if I could somehow share the photo with you, wait, go to rheuminfo.com - it’s the nerve test. Maybe if he sees it in writing he’ll do it? Worth a shot.

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No I havent had one done yet...but my CK levels dropped by 30 plus points!! I need to talk to my rheum when I see him again. My muscles are burning like crazy right now.

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Same have had bad pain and numbness in my left leg and been walking on my toes.🤐 Having arguments with doctor doesn’t help!!!

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Doesn’t the burning hurt like hell? Mine wake me up at night...tingling, burn with pain...I drag my butt out of bed and go get an ice pack and arnica gel and do that until I fall asleep again. Good luck to you.

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Damn it hurts so bad. Worked all day and in bed right now wanting to cut my muscles out. The thighs are the pits. I rubbed CBD oil all over myself today at work. I was out or my mind. Good luck to you this week. Keep me posted.

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Oh damn, sorry you’ve been feeling that way. I’m walking with a cane right now and not doing well with it at all...that rheumatologist appointment can’t come quick enough.....I’ll keep you posted. Take care you. ❤️

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Ditto. Hang in there.

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Same have tried everything!! Just been in the hospital with left/leg and foot pain and a lot of ulcers in mouth!!🌸

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Sorry you are in the same boat! Hope you hang in there.

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Someone on here told me about the magic mouthwash.....if you can get a script for lidocaine, then go get children’s benedryl and maalox and mix it...google the instructions on proper mixing. Apparently it’s great. I use oragel on the spot itself and then just bought a generic rinse from the drugstore for now....oh and popsicles, lots of popsicles. Foot pain/leg pain - I’ve been using arnicare arnica gel from amazon or frankincense oil mixed with any lotion and massaging it onto my painful legs and feet....it’s been helping a bit. Ice too. At this point, I’m trying anything because I’m not being treated yet. I just got gel insoles too to see if that makes a difference. Good luck. Hope you feel better ❤️

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Thanks so much; Just spent the last week in hospital with my doctor arguing about it all. Don’t see specialist until November!!🌼

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I started Otezla several months ago. It’s the only thing that’s ever worked for my mouth ulcers. It doesn’t seem to help other BD symptoms but it’s amazing for the ulcers. I’ve had NONE!

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I have horrible foot pain. Feels like someone took a sledgehammer to the bottom of my feet! Seen foot doctor and he can’t find anything wrong. My ankles are extremely tight always and two months ago in a two week period I tore a muscle in calf and two muscles in ankle just walking through my house! No explanation. Hips hurt off and on and excruciating low back pain only in the morning when I’m getting out of bed.

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My legs and feet are swollen since Dec 2017 and no diagnosis, pain in my feet and scales of skin peeling off. I’ve just been told I have a torn acl - from what? Hate to tell you but it’s all part of this horrible disease. I found that out by reading posts after posts. I’m waiting to see my rheumatologist.....have you seen one yet? I hear he’s the guy to see. I feel for you - the pain is unbearable. Try arnica gel for your back and your pains, it gives some relief. Feel better.

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Oh wait your rheumatologist appointment is in December, did you call and try to rebook?

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Yah I have tried to get in sooner with no luck. My reg Dr suspects Behcet’s due to ulcers and everything else. I’ve had ulcer tested multiple ways and always negative. Blood work is always normal. I wish my regular doctor would give me something anything to help while I wait. She’s been treating me for Lymes disease even though all the test are negative. It hasn’t helped at all. Im absolutely miserable! I can’t do anything I used to do a year ago. I love nature and hiked a lot. Now I’m lucky if I can walk an hour. I feel completely alone and no one believes me. It sucks!

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I hate to tell you but they won’t give you anything until the rheumatologist has had a chance to see you, I’ve been going through this for a long time with only T3’s for pain and nothing else. Like I mean years. I used to ride a motorcycle and I’ve been down for the past two seasons, I’m lucky if I can walk for 10 minutes now and that’s with a cane. Stay here, we all believe you because we’re all going through it and we all support you. It’s awful when your friends say, well you look fine and you are struggling so much on the inside....you want to open up your mouth and say look, or show them other things. And family....are you sure that’s what you have dear...oh for f sakes I’m not making this sh*t up. We believe you. Try to hang in. If you can swim at all, it’ll keep your muscles flex until you see your rheumatologist. Keep reading and writing posts here....also not sure where you’re from but the American Bechets Society has a great website, the Canadian one not so much. You’re not alone...you got us, your BD buds!

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It's always frustrating when they can't find anything and say it's "normal" when we are clearly struggling. Then we are left to our own demise to manage this somehow.

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It’s normal means they have no clue. Ticks me off. I’m in pain - help me. 🤦‍♀️

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Yeh it drives me bat sh#$ crazy.

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I am going for PT. I emailed my rheum and he recommended this. Has anyone had PT?

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What is PT?

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physical therapy

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I’ve had it on a torn meniscus but not with this. I’m not going to lie, it hurts but it eventually does bring relief..

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Never had it. No idea how it will help buy worth a shot.

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You know what, try it, if it doesn’t feel good, stop. They massage for a bit then show you some exercises on machines....that’s the easy part. PT (lol) takes a good 8 weeks to do anything though.

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