Leg pain
 

Anyone else get bad pain in their shins while they are sleeping? It is different from cramps. With cramps I can put pressure on it, stand up, and it helps the pain go away. I do get those kind more frequently, a couple of times a week.

These other leg pains are a burning pain in my shins that wake me up. It hurts worse to put pressure on it. If I move the wrong way they tighten up and hurt extremely bad. They make me want to scream they hurt so bad as I tense up it gets worse. This usually lasts for 15 to 30 minutes.

Would taking a Mestinon tablet help? I thought about putting ice on them, but it hurts to walk on it and the ice is downstairs.

Any other ideas for immediate pain relief? Right now I only get these about once a month.

I use to get these every once in a while. Now I am getting them like every night they are horrible. They are def like u said different then cramps but that's what it feels like. I don't know what it is or how to make em stop. I told my neuro and he said that it could be the mestinon but I did some experimenting and I don't think it is. I need my mestinon or I can walk but now with this I can barely walk... ivig has been the only miracle for me andim waiting for the lovely insurance who is taking. Their sweet time { they don't haveta live my life }

Have you told your doctor about it? Leg pain like that should always be investigated. Peripheral artery disease is a common cause. Yes, it could be from MG but it could also be from lots of other things like clots or an imbalance in electrolytes, etc. Maybe your doc could have standing orders for a blood chemistry for when it happens again.

Does it happen any other time? After walking a while? Maybe keep a journal too, like what you had for dinner the night before they happen (i.e., high potassium meal, like with tomatoes, etc.).

It's definitely worth a trip to your internist.

Annie

I don't see my neuro until Nov. Last time I was there I was doing so well that I didn't have to come back for 6 months. If it continues I will see him or my family Dr.

I had shown him a red rash I get on my calves when it is really hot out and I have been standing on my feet. He had no idea what it was. I told my dermatologist about it and she said it was due to poor circulation. I should wear support socks when standing :(

I get bloodwork done every month since I take CellCept, would something show up there?

It only happens when I am lying in bed.

Well, that and the rash should prompt a visit to your primary doctor soon.

A lack of circulation is not a small issue. A cardiologist is the one who would assess that for you.

Thanks Annie. I researched Peripheral Artery Disease and many symptoms sound similar to what I have. My heels hurt a lot too, I wonder if that may be related. UUGGHHHH:(

Wouldn't you know it, I am a teacher and start back next week. I have been off since June 4th, but haven't needed to go to the Dr. during that time.

I'll call tomorrow to get into my family dr. and go from there.

It's possible that your symptoms might be due to something as simple as Plantar Fascitis. As we get older, the muscles in the bottom of the foot can lose their elasticity - when that happens, the "arch" in the foot starts to "sink", which causes extra strain on the muscles in the foot, heel, and leg. That can cause them to hurt like an SOB - you would definitely feel it in your shins and heels - and most people report feeling more pain at night (even to the point of being woken up :eek:). The pain tends to get better throughout the day as the muscles get stretched out during walking.

Fortunately, Plantar Fascitis is almost always able to be fixed with custom-made shoe inserts that are worn every day (and if you don't wear them, you WILL start to feel pain again.....). Sometimes when we wear sandals in the summer, that can make things worse as well, as they don't tend to have as much support as "closed" shoes. It takes about a week or two to get used to wearing the inserts, but after that you forget they're there. And the relief is nothing short of AMAZING.

If the inserts by themselves don't help completely, some people wear corrective "boots" at night - they basically look like the covers you see on leg casts. These keep the feet at a 90-degree angle to the legs, which keeps the leg muscles stretched out while you are sleeping. Most people don't need to use these (the inserts usually do the trick); however, it's another aid that is available if need be.

As far as your rash goes, have you checked to see if one or more of the medications that you are taking has a warning about being in the sun :cool: while taking it? I never cease to be amazed at how many medications and/or supplements now carry that warning. If you are taking more than one medication that is "sun-sensitive", it increases the possibility that you will have a reaction.

Does your rash itch? Is it primarily under the skin, does it consist of raised bumps, or is it a combination of the two? It's a silly question, but have you started using a different brand of sunscreen? It's possible that you may be sensitive to one or more of the ingredients and/or there may be an interaction between the sunscreen ingredients and one of your other medications. :wink:

All of the things that you mentioned are probably due to something simple, but you should definitely visit your doctor, just to rule out anything serious. A doctor/podiatrist will have to diagnose Plantar Fascitis if you want your insurance to help with the cost of inserts and/or other aids.

I hope this helps! :hug:

Years ago my GP thought I had Plantar Fascitis. It hurt on the bottom of my feet. It got better when I stretched it out with resistance against it. What I have now allows me to put no pressure on it.

I noticed today that even flexing to put my foot on the gas when driving made me ach a little, I just was praying it didn't tighten up on me while driving.

The red rash does not itch at all. My dermatologist thinks it is circulation related. I did take pictures of it show I can show the dr. I take CellCept which does make you more sensitive to the sun. On Friday nights from Jan to July I work at a job where I stand on a cement floor from about 7 pm to 4 am after teaching all day. It only showed up the last 2 years in July when it was really hot outside, which made it hot inside the building also.

My feet did the same thing before I started wearing inserts. It's certainly worth looking into, just to be sure. The inserts help keep that muscle stretched out - if you look at pictures of those muscles at the bottom of your foot and just how many other muscles are attached to them, it's easy to see how if one of them isn't operating at peak capacity it can affect so many others.

It's an "age" thing, unfortunately. The funny thing is that when I went on a gluten-free diet 2 years ago, my muscles all got stronger - I guess because my body started to absorb all of the nutrients necessary to get to my muscles. I found that I didn't need to wear my inserts any more; my feet stopped hurting. I could actually feel the arch lift up after a couple of months.

I'm sure it will come back as time goes on, but at least then I'll know what I'm dealing with. As I recall, though, the pain was quite intense. But it did go away after I started wearing the inserts - within a couple of weeks, if I remember correctly.

Good luck, and I hope you are able to find some relief soon!

I disagree that plantar fasciitis is an inevitable part of growing old. Sorry, Teresa, but I'm "old" with MG and have never had it. ;) Not even back when I was young and wore heels to work.

The fact that you have it in both legs and that you also have a rash, even if it is a side effect of a medication, is concerning.

Only a doctor can tell you for sure if it's something you can shrug off or if it's something more serious. I hope you will write down all of your symptoms, when they occur, exactly where they are on your leg/ankle/foot and what they feel like.

There are diseases, like Ankylosing Spondylitis, which can have more frequent aches and pains like that. I'm not saying that is what you have but using it as an example of the many things that can make your muscles feel that way.

Sure, just having MG is enough to make muscles weak and become strained but what you are describing does not sound like simple muscle strain. Also, inflammation can increase after being in the sun. The sun's rays are toxins to our bodies. People with lupus are more sensitive to its effects.

I hope you do get to the bottom of whatever is going on.

Annie

Ooops! I didn't mean to say that everyone would get PF as they aged, just that it's more commonly seen as people get older; most peoples' muscles lose strength over the course of their lifetime. Of course, it's also much more common if we carry extra weight, but my momma would slap me upside the head if I suggested that someone was perhaps not the most delicate of flowers..... :p (I'm what's politely known as a "big girl")

And I certainly didn't mean to imply that it was an MG-related condition. Plantar Fascitis has nothing to do with MG whatsoever - it's something that is seen in the general population all the time. I was diagnosed with it several years ago, long before I developed MG.

I was shocked when my doctor told me that all of the pain that I was feeling was due to something as simple as fallen arches (the layman's term for PF); I certainly never would have suspected that the muscles at the bottom of my feet were so interconnected with all of the other things that were hurting.

It doesn't take much change in those foot muscles for the whole leg - and sometimes even the hips - to be affected. Once some of that support is lost, the leg "pronates" (turns in), which throws the whole alignment of the leg off-kilter. Instead of all of the weight being carried in a straight line, it starts to be carried on a crooked axis. That causes a person's legs to have to use muscles that aren't normally used for walking. The weight shifts from being directly applied to the bottom of our heel to a point just slightly to the inside of the heel. Our knees try to compensate by rotating outward, which puts a strain on our shins and calves that they aren't used to.

And even the tiniest and slightest of changes to that extraordinarily tough muscle at the bottom of our foot can end up causing the most excruciating pain throughout our entire lower body. Most people aren't even aware that their foot muscle has lost some of its strength.

I guess having an MG diagnosis is a double-edged sword - on the one hand, whenever we have a medical problem the first thing that we suspect is that it is MG-related. On the other hand, we automatically assume that our symptoms are MG-related, when they might, in fact, be totally unrelated to MG. (One of the first things that medical students are taught to do is to not go looking for a zebra when a horse is standing right there in front of them.....) :D

Sorry for the misunderstanding..... :rolleyes:

It gets even more fascinating! (This from another Big Girl with PF). Part of the contributing factors is loss of fat in the feet. Why in the world does the fat go from there and not from where I want it to go???

The fascinating part is that the fascia (the tough fibrous stuff enveloping the muscles) is basically interconnected with other fascia all the way up your body. So, from your foot it travels up your leg, up your buttocks, and then at some point towards the upper back the connection crosses over to the other side of the body and continues out to your finger tips. Pain in the heel can literally affect your opposite arm through a domino effect. Having said all that, the best way to deal with the heel is to stretch out the entire body, when your heels are hurting and before they start hurting. Yoga helps me to get that job done.

HI Tbarney!
 

Hi sweetie! I have never had shin pain, but leg pain to the point of having to go to the emergency room. I wasn't even able to walk. The pain was so bad that morphine barely cut it.......

They still haven't figured out the source of the pain, though it has been less frequent as of late.:D

I am so sorry to hear you are going through this. MG is enough without having to deal with more crap.

Know that I am thinking of you and praying for you.

Big hugs!
Erin:hug:

Here, read this.

http://www.genome.gov/17516396

Have you been checked for any clotting disorders? APS is very common in those who have other autoimmune diseases.

I have an appt. with my GP on Thur. I will talk to him about these things.
Interesting link Annie. It talks about a connection to miscarriages, I have had 2, but years ago in 1994 and 1998. AFter each miscarriage, I did have a healthy child :)
Good to hear from you Erin.

People with APS can have healthy children. And maybe you didn't have it then or now, who knows. I have two autoimmune diseases and I know I have to be on the lookout for anything else to crop up. Even APS.

If I don't have enough vitamin D, I ache. I hope you can figure out what is causing yours to happen.

Went to my GP today. The pulse in my feet and ankle area were good. They did ankle xrays which looked fine also.
He said the heel pain could be plantar fascitis and suggested I wear heel inserts.
He thinks the other leg pain could be vein related and is sending me to a vascular surgeon in 2 weeks. I am getting a lot of varicose veins in my thigh area. He suggested I could not be getting enough blood to my lower legs. He also said my arteries should be checked out.

No offense to your doctor but a cardiologist is usually the one to assess arterial issues. They can do an ankle brachial index, where they do a BP of your arms and legs, among other things. Or did your doc suggest that?

Inserts won't hurt but usually, if it is plantar fasciitis, it can require physical therapy too, for the best outcome.

Do you have any sore spots on your back/butt/hips? Feel around and see if there is. Any weakness in your trunk muscles can throw off the spine. That can cause pain anywhere in your legs too.

Whatever is going on, I hope you get answers and relief from it.

Annie

They did BP/pulse of my feet and arms and it was good in my feet.

I have had a sore back through the month of July and part of August due to 2 weeks of sleeping away from home, on vacation and visiting relatives.

I have great trust in my dr. so I will go to this next appt. and go from there. I feel he is doing the right thing.

TBarney, I didn't mean to imply that you couldn't trust your doctor. I always try to put any possible helpful information out there, in case a doctor hasn't mentioned it or thought of it, that's all. It's great you have a doctor whom you can trust. That's half the battle.

No problem, Annie :) It just seems there are people on here unhappy with their doctors. I just wanted to say I am happy with my "team". That is what my opthamologist refers to everyone as.

I wish there was real "team" doctoring, where the undiagnosed patient could go and get help. And not like at large institutions where you are shuffled all over the place. I mean where doctors actually sit in the same room and discuss cases and solve every single one of them.

The thing with doctors, at least for me, is that you don't need to talk about the good ones. It's only when you've been kicked around by the bad ones that you really need to talk about it!

I have fabulous doctors too. I'm afraid that there are way too many neurologists out there who are rather controlling and not good at being open-minded or at figuring out problems that don't neatly fit into an algorithm. And when they think you have "possible" or "probable" MG, they don't do everything they can to "definitively" figure it out. Or take a good guess.

Sorry, I had to get that out. We could all use the very best of doctors and doctoring in general.

Annie

I saw the vascular surgeon yesterday. He thought my arteries looked good and I had a good pulse in my feet. He told me to wear compression socks and to see if that helps.

They sold me a pair there for $42.50!! A little pricy. I went to Walgreens and they sold them from $9 to $15. I got them home and realized I bought the wrong compression.

I found some online tonight for about $15 a pair. Anyone else wear these? Do you have a favorite brand?

I wear 30-40mg knee hi's from Jobst. I get them on sale (annually for 36.50 per pair). The price you paid is about right for the knee hi's not on sale.

You can order online from 'Discount Stockings'. They are less - but by the time I pay shipping, I come out about the same by getting them at the annual Jobst sale.

Try contacting a medical supply store - get quotes and ask when Jobst will have their next on site promotion. That's when you get the best price.

Sue