Pains in legs : Can anyone advise... - The UK Mastocytos...

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Pains in legs

Lemrac66 profile image
5 Replies

Can anyone advise diagnosed sm

Week end both my legs from my knees to my ankles was extremely painfull.and back of my calf muscles. Tried rubbing my legs tried walking around..it went in the end. Is this something that happens with sm

Lemrac

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Lemrac66 profile image
Lemrac66
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5 Replies
JayCeon profile image
JayCeon

Hi - wouldn't put it (or anything) down to SM (or anything) too quickly. My best bet for local pains like these is youtube videos for stretches, exercises, acupressure points or trigger points. In this case I'd try calf stretches first, not too long, but regular throughout the day, similar to the ones for plantar fasciitis. Not necessarily while you have the pain, but to prevent it from coming again. But if I'm very careful it also helps a bit while I'm in pain.

Next arnica cream and some form of heat. Probably not cold, unless heat doesn't help. Depends a bit on if it's "inflamed" or not. And Epsom salt baths, whether it's the magnesium or the sulfate in there, or the warmth, or the relaxation that helps.

If it's new and you can't get a handle on it, you could put it on the list for the next doc appointment.

Lemrac66 profile image
Lemrac66 in reply toJayCeon

Thank you I try it out.So fed up .no energy .can't even go for walk

Can never sleep .legs feet keep itching .

JayCeon profile image
JayCeon in reply toLemrac66

Yeah, I know, it gets so much doesn't it...!

Energy/fatigue is also now my biggest issue, and so fundamental. With what little we have, it helps me to track all symptoms and tackle them one by one (usually possible without meds, at most supplements).

I can hardly go for walks either, but I can cycle slowly a bit. I do have a few methods to manage a 30' walk, if necessary, but can't keep up with my wife, so usually cycle next to her. So instead of walking I do a variety of stretches and exercises. And play 30' of table tennis almost every day, without moving around much, just my arms.

My first and foremost was and is always sleep. Such a lot of work, every single night. I found 30+ insomnia triggers and 3-4 things each that help. But even then, I still just keep waking up, wide awake. So after a long time trialling various things found a few basics that often work, if I do them all. I got to almost 9 hours of "sleep" last night, but up 9 times, 1h35, and about 1h hour of what I count as sleep was actually dozing, and another 30' was Yoga Nidra as effective sleep substitute.

Legs & feet itching is a tricky one, could be quite a few things. And is basic if it is an insomnia trigger. In my case it's my skin, sometimes in combination with nerves. To prevent that I reduce water contact by showering only for one minute, soap only on feet, not legs. At the moment it helps me sleep a bit better to (cold) shower several times a night, but then only for 30 seconds, so altogether 2 minutes per day. No rubbing, just patting dry. Creaming the skin sometimes makes it worse. Does yours seem to be an allergic reaction? If so from the inside or the outside? Sensing that might give a clue as to the trigger. Inside could be something like food, outside could be water, soap, textiles, washing powder... To find out triggers we need to note when it gets better, when it gets worse.... (Have you tried any meds that have helped or made it worse? Meds always make mine worse, but antihistamines might help with itching.)

Any ideas for you there?

Lemrac66 profile image
Lemrac66 in reply toJayCeon

Thank you so much for replying.I can understand all your saying.

Sleep and nights I hate it.i sleep 2 hours and wide awake I just can not sleep.

Tried reading but I no longer have patience to read.

Put film on start nodding off .try sleep wide awake again.

My legs felt swell up night and day itch itch all time.as for going for a walk I am so slow.

Makes me hot start feeling weak .feel I going to drop..start going dizzy.lucky I have my walking stick the physio gave me.

I currently on no medication got appointment with guys hospital later this month...

Sorry its a long reply but someone other

Things.

People just don't understand

Thank you so much.

JayCeon profile image
JayCeon in reply toLemrac66

So what'd happen if you'd just let a nice gentle relaxing film run on again and again?

Or what about Yoga Nidra? - this is my favourite: youtu.be/wh8Uu9IeuYY

If you legs swell up, what happens if you put them up against a wall once an hour?

I do that before, during and after walks, but I also spend most of the day with my feet straight forward.... Lymph drainage might help stop them swelling too. Experts can do that, but we can also learn it on youtube.

When I feel dizzy, weak, as if I'm going to drop I don't go for a walk, I don't even walk much in our flat. But I try to find short slow movements that work. I shuffle around quite a lot, even outside, to save energy. Don't care what people think...

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