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Muscle cramps anyone?

Twuzzy
  • By Twuzzy
  • Posted July 27, 2008 at 8:47 pm · 28 replies
  • In Symptoms
  • Shared with the public
0 Recommendations

Before I was diagnosed, I suffered from MASSIVE cramps in my legs - mostly my thigh muscles - that were the worst pain I have ever felt. Anything neurological was ruled out prior to the Sarcoid diagnosis....other than the cramps, a sed rate of 91 and some occasional pain in my hands were the only symptoms I had....except debilitating fatigue, of course. A couple of days ago, the muscle cramps started coming back (they are like 'Charleyhorses', but worse). Orignially I was told they were unrelated to the Sarcoid, but I am having my doubts. Too much of a coincidence. Has anyone else had any experiences with this?

Explore topics in this discussion:

Dizziness Plaquenil Confusion Baclofen Anemia Hyperparathyroidism Muscle cramps Pain Peripheral neuropathy Prednisone Edema Dystonia Sarcoidosis Clonazepam

28 replies

Cheesypops

calf muscles and bottoms of feet mostly. Especially during the night with feet. But not so much lately...Now tht I think about it..It has been a bit since I really had to bother with this issue constantly.

Not sure if its hydration, or what that has changed for me... But hope you find an answer

Teacherteacher

Are you on a diuretic and prednisone?
TT

Two_Labs

Twuzzy,

I get those charlie horse type cramps in my feet (arch area b/w big toe and ankle) and hands (thumb joint).
In the past (before my sarc diagnosis) I would get them occasionally in my toes. I found eating potassium or a banana helps keep them from being as severe though I never know when they are going to happen. When they do occur I have successive attacks (two or three within a hour period and a few over the next few days) then I won't have them again for a while.

DebiT

I have horrible cramps in my thighs too! At times the pain is unbearable. My doctor prescribed Lodine (an anti inflammatory) which hasn't helped much. The doctor isn't sure my pain is related to my SARC diagnosis either. Seems to me, from what I have read here, that a lot of us are in pain and our doctors don't believe our SARC diagnosis has anything to do with it.

priscurl

Hi guys,

If you are getting cramps and have been diagnosed with sarc it should ring alarm bells. It could well be related to sarc. As long as you don't have other symptoms along with the cramps, such as nausea, vomiting, confusion, difficulty urinating, itching, red eyes or lethargy and fatigue.

The above are symptoms of hypercalcemia which can occur due to sarcoidosis. It may be worth getting the doctor to check ionized Calcium, PTH and vitamin D levels. Your calcium SHOULD be checked on a fairly regular basis if you do have sarcoid. At least once every six months or so would be enough.
Sarcoid patients can have few symptoms of this illness and still be well along the road to it. In fact some have had the full syndrome and still had normal blood calciums but very high urine calciums. It is something to be aware of.

Pris

Tawney

I didn't know that, Pris. I had several months of major calf cramps around the months my tests showed calcium in the urine. They'd happen in bed at night every night. Totally disregarded by my immunologist when I asked him what could be causing them.

priscurl

Hi Tawney,

I inadvertantly answered this question in your journal thread. My God, how thick are these docs you see. That is quite significant. You must see Sue, Tawney, at least she will listen and take you seriously. She will send you to top specialists.

Pris

priscurl

I better correct and make clear something. If you have a raised vitamin D, one of the symptoms you can get is muscle cramps. High vitamin D can lead to hypercalcemia. Please don't confuse the cramps with tetanic spasm of muscle which you get with hypocalcemia.

Calcium is best done when a patient is relaxed and with no torniquet.

Low vitamin D stores which doctors frequently measure as vitamin D does not rule out high urine and serum calcium levels in sarcoid.

You can also get muscle cramps with low vitamin D levels so it should be checked out. You can get hyperparathyroidism secondary to sarcoidosis and have a confusing blood picture.

With sarcoid - all three are best measured together to get a complete picture.

Twuzzy

Thanks for all the input. I had the muscle cramps prior to taking prednisone. My doc has had me taking both calcium supplements and vit D supplements since I started the prednisone. The muscle cramps disappeared from the time I started the prednisone until just recently, when my dose was reduced to 5 mg. It could be coincidental, but I am doubtful. My doc checks my blood calcium every 6 weeks and it has always been normal. Is it possible to have sarc IN your muscles?

Twuzzy

OOPS, I failed to answer what could be an important question. I do take a diuretic; I have been since 1997. I have suffered from edema in my ankles and lower legs since that time - cardiac workup, kidney workup, etc - all normal. They have never found a reason for the edema, so they just slapped me on a diuretic. I have wanted to try going off of it, but since the Sarc diagnosis my docs don't want to take me OFF anything ("while on prednisone").

Soosie

When the sarcoid came back just before Christmas last year, one of the first things I experienced was muscle cramp and terrible pain in my joints. I could hardly move and found it very difficult to get comfortable. I also suffered from cramps in my feet and toes. I took co-codimile which really helped and after a while (about 2-weeks) it went away. But then, just before easter this year the pains came back. A test showed I had too much calcium but nothing was said to me about what to do to best combat the pain, so the co-codimile came back into use. At the moment the pains have gone, but the cough is really bad and my breathing has got worse. I use the lift at work to go up 2 flights now as I just cannot climb the stairs. I have decided to go back to Slimming World next week to try and get some control back in my life. I feel I have no control over the sarcoid but at least I can try to lose weight and maybe feel a bit better about myself. take care everyone and keep smiling.

Mark_K

I used to have cramps in my arms and legs, now it seems to be getting better now all my other symptoms are getting better. Someone suggested to me that tonic water would help with the cramps. It may help you?

Mark

dlwellz

In 1996, one of first symptoms was severe muscle cramps. I was given a med to help and it did. However, it kept happening. It would happen at night time for the leg cramps and then in the day time when my hands would cramp and my fingers would contract. There was no comment made about a sarc connection. In 1997 when it was at its worst, I had an episode where I passed out, fell across a sofa arm, and tore my diaphragm. After less than a minute (?) I awoke to pain in my chest and not feeling like getting up at all. EMS came, found chest pain AND erratic heartbeat, so off to the ER. Within a few minutes of arriving, docs determined that my potassium was extremely low. They fed me K by mouth and IV and relief came quickly. However the injury from the fall kept me there for several days for treatment and tests.
I have taken big doses of K since then with no serious trouble with cramps since. For about three years I could not get my K level up to the minimum. Now it runs at an average level while taking six 20meu of K per day. Now I am told it is because of the sarc. P.S. I also have a low body temp of 96.8 (not 98.6). I sweat buckets often for seemingly no reason.

Twuzzy

Interesting......my body temp always runs 97.0, and I am hot all the time.

dlwellz

I am under the impression that low (or high) body temps are a neurological problem with sarc. In this hot weather, I sweat torrents. Sometimes in cold weather I have also sweat torrents. Most things I learn about sarc come from experience and trying to find out about it myself. My primary care doc has been learning along with me since 1996.

momof10

Twuzzy,
I also have the horrible cramps in my upper thighs. They come and go , but when I get them I get alot of them in the course of a day or so..
never thought it may be related, but I think different now.. My General Dr. thought it was muscle spasms. but this was long before my diagnosis,, I guess I better startwriting down my symptoms,, I am seeing another Pulmonoligist for a second opinion..

momof10

Twuzzy,
I also have the horrible cramps in my upper thighs. They come and go , but when I get them I get alot of them in the course of a day or so..
never thought it may be related, but I think different now.. My General Dr. thought it was muscle spasms. but this was long before my diagnosis,, I guess I better startwriting down my symptoms,, I am seeing another Pulmonoligist for a second opinion..

Laura7

I have terrible charlie horses in my legs quite often. The pain is unreal. It is mostly at night but been known to happen through the day. I also get them around my rib cage. You feel like you could drop to the ground. Last week I was throwing up, speech was all messed up and felt like I was going to pass out. What a horrible feeling being alone with two special needs children. I dont recall ever feeling like that before. I like others dont know if its connected to Sarc or what. I have allot of body aches and especially my leg pains. That is a everyday thing. From the knees down. I hope you get to the bottom of whats going on and please let us know what and if you find out anything. Wishing you all the best. God Bless

Laura7 E.

Two_Labs

Ahh this all sounds so familiar...sweating all the time, low body temp but always feeling hot, charlie horses in your feet, hands, legs, low potassium...

Do you ever feel like a one person carnival show?

Twuzzy

Yes, and thank good ness a biopsy proved I have Sarc....otherwise people might think I was a hypochondriac!

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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