Behcet's Syndrome Society
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Numb Toes and Fingers?

Hi! I was wondering if anyone here has experienced the same symptoms? I was diagnosed about 2 years ago with Behcets after flare in which I had high fevers, extreme muscle stiffness to the point of immobility, and genital ulcers. Since then I've only had one mild flare this past winter, however I do experience muscle/joint soreness and stiffness daily as well as migraines and fatigue. Another interesting symptom that's developed is my numb appendages. My smallest outer toes and a little down the side of my foot first went numb about 1 1/2 years ago and the feeling has never returned. I saw my rheumatologist about this but she seemed unconcerned and told me it was probably my shoes. Since then I've changed my shoes dozens of times and still the feeling has still not returned. It's just surface level numbness, I can feel pressure but I cannot feel sensation. Recently I've manifested the same thing in my hands, just in the pinky fingers. It stayed for two weeks and has subsided now, unlike my toes.

I'm curious if anyone else on here has experienced anything like this?

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Hi, my daughter has suffered for 12 yrs now and her little toes go numb also and one of her little toe nails always falls off, she has asked her professor who looks after her and she has said its down to circulation as Behcets is a vascular disease there is nothing that can be done, also her hands are nearly always cold which could be Raynaurds which isnt associated with Behcets

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I'm sorry to hear about your daughter. She sounds like a trooper. It's comforting to hear I'm not alone in this symptom but it makes sense that it's just an issue of circulation, that was my thought as well since behcets is a vascular disease.

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ME too! my two little toes on right foot have been pretty much consistently numb. I noticed it most in the shower. I am colcrys, and so when i brought that up to my rhuem as a side effect, she dismissed it pretty quickly. Thing is, it definitely coincides with me starting that medicine.

As for your other ailments (that I also used to get- the muscle stiffness and ulcers and joint pain to the point of tears and cant do anything), whats your diet look like? Start cutting all processed food and carbs from your diet. I swear to god, me and many others on here are advocates of a no sugar, yes NO sugar, no processed diet because you feel better within DAYS. Think: meat, fats (avocados, skins on chicken, actual butter, and cheeses, (unless you have dairy issues) and veggies... a veggie with every meal. If you click on my profile, Ive written all over this site with meal ideas.

This week were doing:

fried porkchops with stuffed mushrooms, fresh steamed green beans and a mushroom gravy.

Harissa chicken (a morrocan tomato-y spicy paste) with chickpeas and spinach

meatloaf with brown wild rice (a whole grain) brocolli and i am also making a cauli mash "potato" because its high AF in fiber and nutrients.

seafood soup: shrimp, salmon (high in omega 3's) mussels and clams.

lunches consist of good lunch meat like roasted turkey, mayo, good cheese and lots of lettuce. snacks are cucumber and homemade ranch. were also doing a brocolli salad (brocolli-mayo-ham cubes and cheddar and peas)

Breakfast i usually fast as fasting helps my joints a ton as well as my energy, but the days i do eat breakfast, eggs and cheese and avocado and a breakfast meat.

Very little to no carbs up there. Good fats. High in omega threes. Google anti inflammatory diet and build from there. But this means no bread, no sweets. try it. Honestly give it a good go- no mess ups. detox out your body and see how you feel within 10 days,. When I went sugar free, after about 10 days I felt a big difference. When I do eat some pasta(maybe 3x a year) i feel like complete shit. Joints get stiff, i feel heavy, tired. Just hate it. I have been subbing in zoodles or spaghetti squash instead. A nice rice substitute is chopped brocolli florets. Hold gravy in real nice.

Good luck boo and keep us posted.

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Making major changes to my diet would be difficult as I am both busy and poor, but I can decinetly start to cut down on carbs and sugars. Thanks for all the advice with this and especially for the meal ideas, I will definelty try some of those out. Sorry to hear about your troubles too but it's comforting to hear you've found a way to improve things

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By cutting carbs out, you could save money. Could also fast until lunch, as intermittent fasting is really good for inflammation- I do it myself. So worrying about lunch and dinner only- Money and time saved there.

Also for time, go for lunchmeats and pre packaged cheeses: make roll ups. Freezer meatballs and freezer packs of veggies. Usually on sale and ready to microwave in the bag. Could also meal prep on a day you have off (1 to 2 hours total) where you bake up a pan of chicken thighs (very cheap when on sale 79 to 99cents per lb and you can get 10 thighs usually for about 4.50 to 5$ we have giant and shoprite) but anyways put 5 thighs on the pan with some on sale broccolli and roast it for 20 to 25 mins. Theres easy and cheap ways, google and ask. You can do this. :)

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I had/have similar. My fingers used to tingle like crazy as did my toes. Not quite numb but close. The very interesting thing here is the right side of my foot up near my little toe. This began to hurt when I had my first blood clot. It hurts now and again and I kind of use it for a flare marker. When this hurts I assume something is swelling and I am mildly flaring. Not sure how accurate this is though.

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That's interesting, do you think your blood clots are connected to the behcets?

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Without a doubt YES YES YES. Bloodclots are from Behcets. I don't mean to scare you, and I am not a doctor, but I THINK the tingly stuff was a sign telling me my circulation was not working properly and the blood clot was related to this symptom. I was very active when I got a blood clot. Gym rat, martial arts guy, sparred in the ring often. Not at all from sitting idle.

Keep in the back of your mind blood clots do happen. I am not the only one on here who has had them. Best advice if out of the blue you feel like a pulled muscle or soreness for no reason get to the doctor and dont leave until they test you for it.

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Gosh, yes. My big toes and now feet and more toes are numb but also painful from nerve damage. Also the top of my feet is affected, it is very unpleasant to say the least. My rheumatologist said it was inflammation, I am sure he is correct. I create my own herbal remedies (cream/balms/salve) for the ailment and so far it has started to help. I do think supportive nutrients for nerve damage, gentle massage and natural remedies can help including good old fashion foot soaks. I do hope your can find some relief, it is nasty. Wishng you healing!

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Thank you! I try to get massages when I can afford it and I have a friend who makes salves for me that help with some of the muscles pains. I was worried that it was nerve damage but since the feeling has come back in my hands I am now leaning towards issues with circulation

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Raynaud's is most definitely associated with Behcet's! Behçet's disease is a systemic form of vasculitis which means that all of the blood vessels throughout the entire body can be affected at any given moment. Raynaud's is a secondary condition associated with many systemic autoimmune diseases like SLE Lupus, Behçet's, Sleroderma, Mixed Connectibve Tissue Disease, etc. Basically Raynaud's occurs when the tiny capillary blood vessels in the extremities (mainly hands, fingers, feet, and toes; but can also affect the arms, legs, ears, nose, and lips as well in severe cases) constrict to the point that blood cannot properly and efficiently flow, thus causing extremities to become ice cold, turn white, bluish purple,and red in colour, feel numb and tingly, and also causes extreme pain upon blood returning to the extremities. This is actually often times one of the very first "non-specific" or generic symptoms of autoimmunity that occurs prior to actually being officially diagnosed with a specific autoimmune disease. I know for me it was the very first "autoimmune-related" condition that I was diagnosed with by a rheumatologist (this was about 8 years before my Behcet's diagnosis), and also the same for my aunt who has SLE Lupus, Scleroderma, and MCTD, and my grandma who has Sjorgens Syndrome. There is also another condition that is the complete opposite of Raynaud's called "erythromelagia" which I now suffer from. Rather than having the capillaries constrict, they dilate allowing too much blood to flow into my extremities. This causes my hands and feet to swell, feel boiling hot (it feels like my blood vessels inside them are one fire), causes excruciating sharp, stabbing and jabbing pain along with intense shooting nerve pains, the skin is so swollen that it will just spontaneously tear open and bleed, I get severe, deep ulcers and cracks all over my fingers and hands that look like someone took a tiny knife and slashed my skin all over my hands, and it also appears that someone "punched out" or "scooped out" chunks of my skin and tissue. The only saving grace for this is ice packs and prescription-strength lidocaine gel and good quality medical-grade super-soft bandages to cover the ulcers. At times my hands and fingers would be so bad that I would have to smother them in lidocaine and bandage up my entire hands. I was having to live with non-latex medical disposable nitrile gloves on my hands to keep my bandages dry and clean. I could not leave my skin open to the air as all the tiny nerves were exposed and the pain became unbearable (I already take a strong narcotic pain med scheduled regularly and breakthrough, and yet this did not even take the edge off the pain. There were so many times that I had to spend time in the ER with an i.v. In and being given high doses of fentanyl pushed into my i.v. Every 20 minutes just to help make life a bit more tolerable). This condition was in my opinion much, much worse and so much more painful than Raynaud's. At least with Raynaud's you can bear through the attacks by keeping them as warm as possible.

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I have had numerous numb, tingling, burning sensations in feet, hands and arms, worse on the left. They were so bad that my balance was being affected and painful burning and spasms in my arms would wake me at night. I have had MRI scans and there is no sign of demyelination, which is good news.

The sensations are a lot better if I avoid foods from the nightshade family: potato, tomato, peppers (both chilli and bell peppers), aubergine and goji berries. These foods are known to contain glycoalkaloids that influence nerve activity. In my case the influence is such that just a small portion of potato leads to me waking the same night with burning sensations in the arms.

I have read that some of the alkaloids in nightshade foods also have the potential to impede vitamin D uptake and leach calcium from bones.

I now eat sweet potatoes rather than white ones, and put strawberries in salads in place of tomatoes, and use lemon, lime, tamarind or vinegar instead of tomato in cooked recipes. I miss chilli most of all, as there is no substitute for its heat and flavour. Black and white peppercorns are not nightshade family, so they help a bit when spicy heat is needed.

I takes several months for nightshade alkaloids to clear from the body so don't expect instant results if you decide to try a nightshade-free diet.

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