Cramping

[Sandra]

Hi all, hope everythng is doing ok with you. I have a concern I would like to ask about. It's cramping. Not jus tthe my foot's asleep thing, or the charlie horse thing. These cramps start up usually in my feet and left hand. My toes will completely seperate and some will turn in and up or under the others. My hand dose something similar by the little finger and the next in line also bending downward and often crossing under the ohters. There is nothing i can do to stop it, it just has to pass. i can physically hold my foot or hand (as it does hurt) but when i let go the cramp positins will return. Not until what ever is happening just decides to stop. It can go on for hours. It's a real pain at night as it really hurts. I have only mentioned so far my feet and hands however, lately the top of my ankel when I'm in a lying position turn right up toward my shin-bone. The tendon or musscle is rock hard and nothing will deter it either. This past week the top of my leg has joined in, the front part where it wakes me from my sleep and can bring me to tears as it feels like the muscle is literally being torn from my leg. Finally perhaps the scariest one is that I get these smae cramps along my ribs, both sides from front to back. An example of when this particular cramping is bad is when I get in the passenger side of my car. It is excruciating. I have also had the same cramping in ,y throat, like if I yawn or something or move my head in a particular way. Again it feels as though something will burst from the pain, and stiffenss. So what do you think could be going on? It's been bad enough lately that even when i'm not in a cramp my muscles remain stiff and sore and i get so fatigued. Anybody have any ideas what this is about? Thanks so much, Sandra

[SeaBreeze]

Hi Sandra,
Oh you are not alone... All I can say is I have experienced almost the identical symptoms.  My toes curling and unable to put foot flat on floor.  My fingers curling inward like a claw... It is so painful.. I feel like I have shin splints but its from the cramping of my foot and toes. My rheumy thought maybe the cramping was the raynauds if they were cold before spasm.. I was diag with MCTD in Aug. been on Plaq since.  {knocking on wood} I am starting to have less cramping and spasm. Have you had a vitamin D level done lately... I was deficient and swear that bringing my level up has helped a lot.  I was also folic acid deficient... I hope you get some answers... but please know there is at least one other person out here who knows what this feels like... good night.

[lynnmarie219]

Hi Sandra,


I Was having a lot of very painful cramps in my feet and legs like you describe and my thyroid meds were increased and the cramps stopped! I don't know if you are having thyroid problems or are on meds for your thyroid....but I thought it was worth mentioning just in case you haven't had it checked recently. I know those cramps are extremely painful!


I hope you find some answers...let us know if you do....good luck!

[Reenie]

Hi Sandra and Seabreeze,

These cramping episodes sound like carpo-pedal spasms, and are often due to low calcium levels (either regular serum calcium or ionized calcium) in the blood.  The only reason that I am aware of this is because my endocrinologist totally expected me to have these specific spasms, based on my low parathyroid hormone level.  Typically with hypoparathyoidism, it is the low calcium levels that cause the symptoms (such as carpo-pedal spasms).  Turns out I don't have true hypoparathyroidism (my calcium is high normal), and my PTH is being blocked by something else.

Anyway, both of your descriptions sound exactly like what the endo described to me and showed me (with the claw-like involuntary cramping of the hands, wrists, fingers, ankles & toes).  I don't have that and I don't have low calcium levels, but believe me, I researched calcium, Vitamin D, and PTH like crazy, and I got a lot of insight from a knowledgeable lab tech, as well as a physician. 

Have either of you had your calcium levels checked lately?  Ionized calcium isn't routinely drawn, but to me it sounds like both of your symptoms may warrant a further check into your calcium metabolism, including the ionized value.  Having the Vitamin D level and PTH level done along with those would be extremely helpful as well.  Vitamin D helps the body absorb calcium in the places it needs to go, so that might explain why Seabreeze is getting some improvement since being on the Vitamin D supplements.

The endo told me that the carpo-pedal spasms can be excruciatingly painful, so I hope you find out what is causing them and can get some relief.  It sounds like a trip to the Dr. to get some bloodwork done may be in order.  Make sure that you show them what your hands/fingers do when this happens, as apparently it is classic for low calcium levels.  Sometimes the regular calcium level can be normal, but the ionized value is low:  either one being low can cause the spasms.  If the values get too low, it can lead to tetany (tightening spasms over much of the body) or even seizures.

Sandra--if you are getting spasms/cramping in your throat as well, please get this checked ASAP.

Reenie

[Linda196]

In cases where Ionized calcium testing is not available or practical (the blood must be drawn without a tourniquet and delivered on ice to the lab immediately for accurate results), it's possible to get an accurate reading of total calcium from a regular calcium level if an albumin level is drawn at the same time.

The corrected Calcium is based on albumin levels, and the formula is :
Corrected calcium (mg/dL) = measured total Ca (mg/dL) + 0.8 (4.0 - serum albumin [g/L]), where 4.0 represents the average albumin level.

If the albumin level is lower than usual, the corrected calcium will be higher than the total calcium, if the albumin is higher than usual, it makes the equation a negative, and drops the corrected calcium.

[Sandra]

Just got back from an appointment with my resperologist. You see since i have taken a turn with all these new issues, cramping, bladder problems, digestive problems and breathing etc, my rhuemy referred me to a bunch of new sprcialists. So I spoke with my resperologist today and was happy to learn that my lungs look good, but he wa still concerned for my breathing issues. I told him how I was doing lately and again with the pain, stiffness, inflammation and GI trouble. He then told me that he had a look at the CT Scan my rhuemy had also ordered. It was for chest, abdominal and pelvis. He was concerned and talked about something he had seen on the CT that might impac the breathing and the subsiquent lethargy and fatigue. Seems my diaphram is paralized on one side. Sure enough the side that is causing allot of very bad pain with movement, and riding in a car and laying down flat/or sleeping. I told him I felt that what ever was going on it was now getting a bit out of hand as I could no longer just suck it up and keep going even with rest. I told him I was unsure just what could be the problem but told him of this post and mineral/dietary problems, of kust palin inflammation that starts from something so slight as doing a bit of extra cleaning and turns into a wildfire of inflammation and then finally that I had seen a neurologist for an initial visit where without the knowledge yet of any tests he had ordered spoke to me about sjogren's sometimes affecting the central nervous system. So thos 3 things are my best indication of possible aggrivators. As far as this paralization thing who knows maybe the cause of that is the cause of everything, the cramping especially. I told him that it is entirely possible that my shortness of breath and fatigue is a reaction of not taking deep/normal breaths because of the risidual pain left after these terrible cramps. He did have a look at my calcium levels that were done in August and they were OK, but as per usuall my inflammation was high. I showed him this post and the responses and he agreed that it was worth re-testing for calcium. I asked about other defieciancies like the Vitamin D and he said that when the calcium is taken that it would be included. He also asked when I saw my rhuemy again and decided he would give her a call. Terribly interesting stuff isn't it? Painful but interesting. I feel i am now getting somewhere, the urologist did the bladder scope and found inflammation only, and my stomach scope again inflammation but the GI guy said he beileved this is not a stomach problem perse but just involves the stomach. The respirologist is wonderful. I have seen many doctors throughout my life with the AI stuff and most have big brains, it is only the few that get the brain and the ears together. I am confident I am going to get somewhere now. Hopefully it's turns out to be somewhere nice . Can't thank you all enough for your suggestions and support. Sandra

[Scottietottie]

Hi Sandra 

I'm so glad you feel you're getting somewhere at last. Your respirologist sounds like a star! What a difference a good doctor can make. I hope if they identify the cause of the pain they can also do something to minimise it.

Take care - Scottie 

[pudmott]

hi Sandra,
I am happy to hear you are gettig some answers. Your doc sounds like a keeper

Pud

[Reenie]

Hi Sandra,

I'm so glad to hear that you saw your doctor today.  I could tell by your first post that you were in a lot of pain. 

Your respirologist certainly does sound like a keeper!  The fact that he plans on calling your rheumatologist is a great sign.  I'm also glad to hear that he ordered bloodwork.

I hope you get some answers and some relief from your symptoms soon.

Reenie

[Pooh]

Hi Sandra,
Glad to hear you have a great doctor that LISTENS.  Would that God give them all ears to go with their brains. 

I just wanted to add, that after many months of cramping feet, ankles, calves, hands and neck, a friend of mine said to try a Potassium supplement.  I did and after a couple weeks I haven't had a cramp since.  At least when I remember to take the tablet.

I hope yours ease up for you real soon.

Pooh

[pudmott]

You know pooh i think you may have meant a brain to go with their ears.............


Pud

[DMargoA]

Hey SeaBreeze, why do you have a picture of my cat, Chewie (Chewbacca), under your name? lol .. Chewie looks exactly like that and weighs around 18lbs. Anyway, I have also had some cramping in my legs. Mostly what I've had is just muscle spasms in my feet, thighs, hands, etc. I certainly hope I don't get the cramping you guys are talking about, though. My prayers are with you, Dale

[wen.uk]

Hi Sandra and thanks for a really interesting post - sorry you get such agonising cramps, I get them too and it's no joke, just as you describe in your feet and toes.  Never thought much about it, thought it was just normal for me!!!  Funnily enough, my last lot of bloods showed low potassium, I should have had them re-done a couple of months ago but never got round to it (naughty I know) but didn't think it was any big deal to have low potassium.  Hope they improve for you soon - oooohhhhh my clawing toes!

[Mark54]

Hi Sandra  -  This is Chele

I have to use Mark's id until mine is working again.

I read in an April post that you are taking 2 ' puffers ', or inhalers.  Do you mind me asking what they are?

I ask because on and off over the last 3 years it appears I had the same cramping that you have described - feet, legs, trunk area, and neck.  My allergist knew immediately that I had a very rare reaction to my inhaler, which caused the cramping.  As soon as he changed my inhaler, I was cramp free.

I just wanted you to know my experience, just in case it may affect you in the same way.

God's blessings, Sandra!

Chele

[Sandra]

hi Chele, I do have inhalers one is salbutamol the other fluticasone ihn, but i seldomly use them. I do use them when a flare-up has gotten out of hand or I catch a bug. I have never had a positive athsma test as I am on prednisone so they can't do the test required to diagnose asthma. I really don't catch bugs because of the prednisone I think, so I believe my lungs suffer from flares of sjs when they do suffer. I have not noticed any link with cramping when i have used them, usually no longer than a few weeks. The only definite side effect is the tremors which are widly known. Thanks for the input it is all appreciated so much. Sandra