Terrible cramping in hands and feet
Posted , 11 users are following.
Hi - I've been on prednisone and now methylprednisolone for my PMR for about 18 months. I'm now on 17.5mg and recently have been experiencing horrendous cramping in my hands and feet. My hands cramp so bad it goes into a claw and is very painful and I lose use of the hands during this time.
I have been drinking tonic water for the quinine and taking magnesium supplements but the problem persists. I also take a water pill for HBP but try to make sure I drink enough to stay hydrated.
Any suggestions ?
0 likes, 29 replies
marla.090252 rocketman42
Posted
Hi, I'm also plagued with hand and feet cramps mostly in the morning, just as I am awakening, but moreso, the cramps occur in my toes, arches, through the ankle and up my lower legs, mostly on the left leg, but the right leg is catching up.
I was diagnosed PMR in Nov. 2016. Was put on 20mg, Prednisone which relieved my symptoms within a day. Since then I reduced to 15mg, then 10mg, (and a short stint of 7.5mg which left me in pain - Rheumy's suggestion to get off the Pred more quickly... duh, nope), so I informed my GP and went back up to 10mg in Feb, '17, where I have been since. I'm still achy all the time, with bouts of random pain, roaming from shoulder to shoulder, upper arm muscles... but the new symptoms are these leg/feet cramps! Toes cramp into claws, locked in a frozen position, until I get up and walk... it's the only way I can force the muscles to stretch back out, is to put my weight on them and walk, and walk and walk.... Usually by 5 min later, they are gone and only an ache is left (lower legs are the same way). It's like "charley horse" cramps... they are so painful, and just in the morning as I awaken.
My leg/feet/toe cramps started about mid-May. First, I thought it was because I was over-doing swimming or too much walking... thinking lactic acid buildup... but it didn't ring true. Lactic acid from overworked muscles, wouldn't show up after 6-8 hours of sleep! And they seem to be getting worse. One morning I felt the cramp run from my toes, included my leg (left side this time) all the way to my pelvis, my hamstrings were like rocks! Incredible pain!
Three days later, I saw my Muscular Therapist, and told her of my leg cramps... she said my hamstrings were still hardened... and it was kinda painful when she worked on them, but she was able to relieve the most of the hardness to the muscles.
I just had my annual physical. My lab tests came back in normal ranges for potassium, magnesium and other blood parameters, except my cholesterol, which has been climbing higher over the last few years, just popped over into the "high" range.
Water is my favorite drink. Tea and coffee are my next faves. So I'm not dehydrated. Prednisone has added an extra 20 lbs "water weight" on me, and my joints are unhappy about it. I may have to see about a "water pill". I've just signed up with a nutritionist to help me with an anti-inflammatory, lower-my-cholestrol, lower carb, and lower my weight diet. Hope this will help, too.
I so understand about the muscle cramps. Not sure what to suggest, either. Tumeric in mustard really upsets my stomach so I'm not taking it anymore... it didn't help the morning leg cramps, either.
My next Rheumy visit is Dec 13. I may have to find some other Dr as she is often away at conferences, and only has 3 days a week appt's. Altho, she is very knowledgeable about PMR, I'd like a Dr. that is around more often than off for 2 weeks frequently for these events.
If anyone has suggestions... I'd be happy to try anything to rid of these leg/toe cramps!
Thx, marla
EileenH marla.090252
Posted
Just because your blood magnesium level is right doesn't mean the level in the muscles is so it may be worth trying magnesium supplements.
You need to be careful about diuretics with pred - it makes you lose potassium and calcium through the kidneys so you should be put on a potassium sparing diuretic if at all and your blood checked regularly. I find I retain a lot of fluid if I eat any food prepared with salt - and are you SURE your weight gain is all fluid? Pred causes fat deposits and weight gain is common. Cutting carbs drastically helps - and also helps fluid retention.
karenjaninaz EileenH
Posted
My creaming seems to come and go with no rhyme or reason. I recently tried a delicious chewable "high absorption" magnesium. It gave me palpitations every time I took it. If I talk half a tablet that dose doesn't result in palpitations. I do not have heard disease after a complete work up but elevated magnesium can cause arrhythmia.
karenjaninaz
Posted
Corrections: cramping instead of "creaming". Take instead of "talk"; heart disease instead of "heard disease".
amkoffee karenjaninaz
Posted
I've recently started wearing compression socks when my lower legs and ankles ached. I don't know if it'll work for your feet cramping but you might give it a try. After all compression socks are not very expensive so it would be a low-cost low-risk experiment.
For your hands you might try copper infused gloves. You can find them on Amazon. I don't know if you can find them locally or not. And that would be a low-cost low-risk experiment too.
marla.090252 EileenH
Posted
Hi EllenH! Thank you for your insights. I do take extra Magnesium (400mg), but I have to be careful if I take more than one a day. I get the "trots" for a day. But I hear you. My Dr said the same thing of Calcium. Blood levels may be ok, but (as in Ca) it's not necessarily getting into the bone. I can believe that of Mg, too.
We eat foods that we prepare, make our own soup broth, and buy organic vege's and eggs. Meats are from local butchers, grass raised, antibiotic-free. if we use a canned item, it's always low sodium. I can't remember the last time I bought a container of salt... we just don't use it.
Nope, not sure the Pred is causing water weight gain. But I'm packing it on like I was going into hibernation!!! I believe it when you say it can cause fat deposits. The weight gain is already there. I am trying to cut carbs... that is a tough one! Getting rid of the fat deposits is going to be harder than shedding water weight. :::sigh:::
Thank you for your time to respond!
Marla
EileenH marla.090252
Posted
barbara_80380 marla.090252
Posted
Thanks for sharing your experience Marla ?? My weight gain? - 30lbs 😢
I’ve JUST begun with the cramps in the last month and I’m anxious to see what suggestions you get 👍 If you’re near the Philadelphia PA area I can give you my docs contacts if you want to research her background . I’m currently on a monthly infusion of Actemra and a daily 2.5 mg dose prednisone.
Take good care Marla
Wally71 rocketman42
Posted
Hi, I am new to all this and still going through all the tests to confirm my diagnosis. But it seems I have the two linked Auto Immunes namely GCA Giant Cell Temporal Arteritis and Polymyalgia Rhumatica.
Although at this stage the PR has not been linked to the former GCA by my professionals. In my case however a low dose of Valium was prescribed to relieve the symptoms of very strong shoulder cramps with severe pain. This has very degrees of success. Linked to these also are cramps in both my fingers and toes.
I have spent a week in hospital attempting to get over the side effect of mass doses of Steroids which have caused a mass swelling of fluids in and around my lungs heart and all the other bits that like to join in namely legs and ankles along with the resultant pain.
I am now on a reduced dose of the steroids 25mg per day down from 75mg per day and have been dropping at the rate of 12.5mg per fortnight. Unfortunately this has proved that the drug was not successful as all previous symptoms are just returning, severe pain regularly and flare pain occasionally. So all the wonders of the cure with a full return to the cause. Not happy. Along with that has also come the mass pain in my shoulder opposite side to the GCA along with the Hand and toe camps to the same side as shoulder. I am putting this down to the Brain controlling opposite sides of body.
Back to your problem, I have added vitamin C daily and Banana a day high in Potassium. This seems to be controlling the side effects but also require the chemical treatment of Diazapam "Valium" to relive the muscle spasm of the shoulder and it may also be helping with the Finger toe cramps, but I am unsure on this.
You have my sympathy as I know how debilitating it is but still hold out hope they can find another method to get rid of or control both my GCA and PR.
Wally71
Anhaga Wally71
Posted
Prednisone is not a cure for either PMR or GCA. It only controls the symptoms by calming the dangerous inflammation which causes pain and in the case of GCA possible loss of eyesight. A rapid reduction in dosage is likely to lead to a flare of the disease, and this is what appears to be happening to you. You need to taper much more slowly, and only after the initial symptoms have been properly controlled. It is important to reduce as soon as you can from the high GCA dose, but not before you are sure there is no longer danger to your eyesight. I haven't heard of having to taper by more than 10 mg even from the highest doses and by the time you approached 40 or 30 mg it would have been wiser to stay on the new dose for a month before a further reduction. The lower you get the slower you should go, so no more than 10% at a time.
There's good reading on this page. Have a look at the Bristol Paper:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
EileenH Wally71
Posted
I suggest you post this as a new thread - more people will see and reply to it then as this is quite an old thread.
To add to Anhaga's reply - the pred never did or could "CURE" GCA. You start at a high dose to reduce the inflammation caused by an underlying autoimmune disorder that causes inflammation in arteries as quickly as possible since it is potentially a threat to vision. Having achieved that the dose of pred is reduced in stages to find the lowest dose that manages the symptoms as well as the starting dose did. But to reduce at more than 10mg at a time is too fast, even at the highest doses and, as you have found, makes it all to easy to overshoot the dose needed at any given time. GCA is very active for the first 6 months - a study in London found evidence of active inflammation even after 6 months of high dose pred. Flares are very common in GCA for the first 18 months - and almost always due to reducing too far and too fast. To reduce at the rate you were told is asking for trouble.
In fact, the fact that they haven't linked PMR and GCA suggests to me that they may not know a lot about managing GCA. Where are you?
Wally71 EileenH
Posted
Eileen Thank You for your advice but the PMR symptoms came much later than the GCA final diagnosis, this is the actual delay. I have had for many years now several shot discs in my neck and this has caused many bouts of muscle cramp in my shoulder. So it wasn't linked to at that time an undiagnosed illness. I am located In the Lower Hunter Valley area of NSW in the City of Newcastle. The Main hospital of seven is the John Hunter hospital and it draws patients from all over Northern NSW as the main Teaching Hospital to Newcastle University Medical College. On Campus also is the now world renowned HMRI. Hunter Medical Research Institute. Leaders in many facets of research and cures of all forms of ailments. I am fortunate that these facilities are at hand and they have a good knowledge in managing GCA.
Cheers
Wally71
Wally71 rocketman42
Posted
I am one of those strange individuals who takes advice from trained medical practitioners licensed to operate in my country. I have to admit that diagnosis of the disease has taken much longer than expected, mainly because my information to my GP did not have the "Classic" symptoms. This led to a delay in getting to the right specialist with further delays in getting appointments. All this time the symptoms grew and manifested them selves into the more classic signs of GCA.
All this time I was researching via Google possible symptom/disease correlation. GP's and specialists, love this format of information. I also looked at several forums as to who what where were suffering similar/same as myself. The one thing I discovered was, many more people than I first thought had GCA. It is now over 6 months since I first noticed the "earache" Then the lower jaw swelling. Not what you would call Classic GCA, so hence the delay in getting to the actual problem.
I was a bit gob smacked when I found that a delay could mean non reversible blindness. To this end I pushed harder to get an answer, which at this late stage I am still waiting for the biopsy result, which should be in the next few days.
There appears to be some concern that my little backwater may not have the specialist expertise to look after a disease of this nature and that the local Doctors may all need refresher courses. Rest assured the facilities here are excellent along with the doctors, the pathologists and even the GP's. My reference to Steroids being a cure was just my slip up and I do know it is not a cure, but just a lousy tool to alleviate some of the symptoms. Which in itself can actually be worse than the disease long term.
So to this end I thank everyone for their advice given so freely, from experienced people. But I have to say I believe I will be led by the professionals who have at the least a handle on my general health as well as the current problem plaguing me.
Kind Regards
Wally71
EileenH Wally71
Posted
I wish you joy - they don't appear to have done too well yet.
Have they told you that the biopsy is not 100% reliable? If it is positive there is no question, you have GCA. But if it is negative it is pretty meaningless - it only means that they didn't find the cells they were looking for. Not that it is NOT GCA - and then you have to make a clinical decision.