Has anyone experienced consistent muscle spasms? I have been doing well with managing APS for many years now. Unfortunately some progression with diminished sensory nervous system and now ongoing muscle spasms. My body just clinches up and the pain levels can become quite awful. The joint stiffness comes along with it, yet I have had positive support with Plaquinil for several years now. It seems to be increasing and not sure if this is a common thread with APS? Thanks for all your support
God bless
Becca in Oregon USA
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Oh that sounds so painful!I very occasionally get muscle spasms - I usually put this down to either low B12 or high salt levels - I have no science behind this. But my spasms are not ongoing like yours.
I really hope you get some good suggestions here and find some relief.
B12 deficiency can cause awful problems, I had twitches for a long time before realising it was that, also pins and needles restless legs and worsening pain and fatigue, another clue if if Folate is low and other things like homocysteine rise. In some countries, the levels see to vary between regions and also be set too low. MaryF
Becca, I was also able to manage my APS with warfarin. Couple of years ago started having muscle/joint pains. Plaquinil Does seem to help although not 100 pct as one could imagine. All bloods come back the same. Did your doctor point APS as the cause ? My doctors think it is a combo of APS and fibromyalgia.
I have had a lot of problems with cramps . I asked a consultant if it had anything 3do with APS . He said it was due to nerve damage from small clots. I had to be stretchered off a hillside one day because the cramps just wouldnt stop. Nothing showed up in subsequent tests. I get them much less often now as I started a stretching routine which I do before getting out of bed each day. Just simple leg movements and stretches. It has made an enormous difference. The other two main factors for me are hydration and salt . I realised I hadnt brought enough water or drink enough beforehand when I went for the walk. My gp also suggested adding a bit of salt to food. I dont eat much processed food and didnt add salt when cooking so wouldnt normally have much salt. I think that's also helped.
I also found a herbal remedy called cramp bark which does give relief. The stretches in the morning have made the biggest difference. I think it probably relaxes the muscles and improves blood flow so I get off to a good start in the morning. Only takes about 5mins.
I second what Ann says above, but will add what I’ve recently experienced.
My brief story to follow has to do with ferritin levels. ( make sure they are at least above 50 at very minimum. )
About three weeks ago I woke up one morning, did a normal “sleepy cat like stretch” as one does while first opening eyes, and was wracked with a God awful calf cramp. The kind you physically / manually have to massage out and pray that if you move you leg it doesn’t start up again.
It did not quite resolve completely, so after a couple of days I went to emergency room for an ultrasound to make sure it wasn’t a DVT. ( I didn’t think it was, but had to be sure.)
My Regular GP ran basic blood work. I asked to have ferritin checked. ( it’s possible to have low ferritin and not be anemic. )
My ferritin came back at 16. Leg cramps / muscle cramps are a symptom of low ferritin. I would have it checked, just to rule out.
Professor Toby Richards in London is a vascular surgeon. He also runs “The Iron Clinic” privately.
I was sent to him by mr consultant hematologist for a vascular consult, and he spoke to me about this, as I had just been topped up in the states with ferritin. He told me I could expect it to last 2-3 years. That’s about right!
Additional notes- and a tip from one American to another:
If you indeed are low with ferritin ( low iron storage) and need to have it supplemented:
1. Oral iron is notoriously difficult for neurological involved APS patients like you and me to tolerate. It will exacerbate our dysautonomia/ GI systems to flare terribly.
2. Oral Iron will cause disruption with absorption of warfarin- very dangerous to our INR values, therefore very dangerous to the hemostasis of blood- causing risk of bleeding or clotting.
This is how your physician gets orders through for IV infusion of blood product - either injectifer or fereheme. Either two brands are ok.
Two infusions will be given 5 days apart.
Pre medicate if you can with dye free Benedryl and 4-8 mg zofran. ( you probably will not even need it. This is a very easy infusion to have. Extra fluids the day before and day after . Most patients do not have to do this at all! We are just special little darlings, 🥰, so I find it is just a good idea. )
Talk to your doctor about these medications ahead of time, to make sure he/ she is in agreement.
Thank you everyone for the support, once again I no longer feel alone when it comes to the mystery of APS....big virtual hugs of thanks to all of you .....Becca
Sorry I was going to write a bit more but it didn’t go through the first time, I have been on iron meds and folic acid so I found that that didn’t help, as I hadn’t had much sun for 2 years I live in the U.K. anyway the pain started in my leg gradually came on like sciatica, if anyone came near me my leg went into spasms really painful, it used to shake, I bought the recommended dose of vit D 3 and a month later I am now some much better, worth a try good luck
Hello Becca, I’ve had muscle spasms since high school. Seems to be a benefit of Hughes. However I have noticed if I forget to take thyroid medicine for a few days it definitely ten folds. It actually threw me out of the bed onto the floor.
So I would suggest the standard tsh and esr tests, but you must demand the doctor run the T-3 and T-4 tests.
The most reliable way to check your thyroid is to have a temperature thermometer by your bed within reach. When you first wake up do not move other than reach for thermometer. Lay still, armpit or mouth is fine. Record three mornings in a row. If you’re in the 97’s you are probably hypothyroid.
Has you been checked for vitamin and mineral deficiency? Electrolyte imbalance can cause those symptoms. When I was younger I often had muscle spasms. A doctor at my college suggested that I eat a banana a day to keep my potassium levels up. That really helped! Then a few years ago my cardiologist suggested I add magnesium supplements and... wow!.... now, for the first time in my life i actually sweat in hot weather and can walk and continue activities in the heat. Also my atrial fibrillation improved a lot. And no more muscle spasms, Its been a long time, but reading your post reminded me of how bad those spasms could be.
Yes! I get those God awful cramps and they are so damn painful and terrible. It's interesting that I never thought about APS causing them. I had them all this weekend! I use a cannabis cream on my legs and try to massage out the cramps. The creme does seem to tame them but I have to continue to rub my feet and my calves and then they subside. But, they come back sometimes and they are so horrible! I also get them in my back and arms sometimes.
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