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Constant excruciating leg cramps
I was “diagnosed” with Fibro in 2009. I had a false pos for Lupus and so this is what they decided I have.
My symptoms increased and decreased in severity for years. About 11 years ago I started getting leg cramps in my sleep. Sure, everyone gets them, but mine would be calf and shin simultaneously. I couldn’t stretch one or the other, because the opposite would spasm more and cause terrible pain. I’d have it for a couple weeks and then it’d disappear.
I went through times were I was very active, in the gym all the time, hiking, etc. but then I’d get, say, tendinitis somewhere and have to lay off.
In august 2021 I fell. I’d been exercising and walking—up to 4 miles a day— for a couple months. I didn’t fall because of pain or disability, I just tripped in a normal way. But I landed in my face requiring stitches in three places, and got whiplash.
Since then, I’ve been downhill. But the cramps! I started getting them in both legs at night. Both shins, both calves, the feet. It decreases in intensity, but hasn’t gone away. Then it increases again. It used to stop when I was up and around, but now both legs are pretty much in spasm all day. It spread to my hamstrings (never as bad), and now I have it in my forearms.
The rheumatologist found “nothing wrong”. The neurologist found “nothing wrong”. He put me on gabapentin, but anything more than 300mg once a day turns me into an a$$h*le. And doesn’t help.
The doctors literally wipe their hands and say, “that’s just your Fibro.”
Is it? I’ve never read about that with Fibro. 🙁
56 yo. Used to bodybuild. Played women’s pro football 20 years ago. Used to cycle, swim, etc.
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70 yr old Female..Fibro since 1987 after attack of sarcoidosis. Limb spasms for years after but abated until 2023. Was put on Seroquel for sleep which gave me back my spasms, also in calves/shins, feet and ankles. Quickly got off Seroquel but spasms continued quite awhile. Helped tremendously by Roprinerole & Tizanidine. Also began some simple foot/ankle exercises. Don't have those spasms anymore.
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1 ReactionGracias for your suggestion re: Synerplex Revive, will be checking it out to see if it's a "possibility" for me. And you are quite correct about God, for He has indeed walked with me and even carried me, especially during times when I thought I would implode. 🙏🏽💕
Although I am indeed sorry for what you've gone through, I have to say that I find solace in knowing that someone else did and does experience what I've undergone, and which doctors just didn't comprehend, simply dismissed as an unspoken but audible to me "Oh, well!" hung in the air. Toes, tops of feet AND soles, ankles and ALL the way up the legs, into thighs and gripping the buttocks --- ALL those areas in excruciating grips of pain, lasting for what seems like hours (when really grueling minutes)...My only save was that at least it WOULD come to an end, while people who are prisoners are tortured for hours and even days on end. So I consider myself fortunate because there IS an "end," and sometimes I can have nights/days without any of that torture that my own body inflicts. I do the same as you: exercises and movement routines learned in PT and from sites, for joints/muscles that do indeed help BUT ONLY TO A DEGREE. I do them while watching TV, taking a few minutes when in kitchen. And I've learned to "listen" to my body, b/c it does let me know when there is an impending cramp. Simple and GENTLE yoga movements are also very conducive to just plain FEELNG GOOD. Yes, it means that we have to engage in self-care, because as women we are so used to taking care of everyone else in our lives that we love. I wish at times that I had a "wife" who could take care of me, just as my husband has me to take care of him....🤔
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1 ReactionI drank a liter a day of tonic with Quinine for a month, it didn't have any effect. I do find that Cymbalta helps quite a bit, noticeably I feel a rush of warm blood in my feet throughout the day as long as I'm hydrated and I don't overuse my feet (too much walking mostly.) I'm taking 60mg of Cymbalta a day. I have PMR and have been taking 15mg of Prednisolone for 6 weeks. At 20mg of Prednisolone my feet were even better. But my Dr., is trying to take me down from 15mg, I'm going to discuss this with him tomorrow. He didn't seem to care less about my feet, previous Dr., recommended 1000mg of B-12, that helped a little as well. I Gotta start taking that again, maybe tomorrow now that I mentioned it. LOL
Yes! You caught my attention. Training your mind to become stronger than your feelings. You are focusing on the positive, knowing the difficult moments,or days, will end and you will get a break again. This is one added tool to help get through the challenges of muscle spasms and cramps, in addition to drinking tonic water, taking medication, etc...
It's not that symptoms will ever truly go away, but without positivity and gratitude for the better moments, it's easy to stay in the same dismal mindset which fuels the fire and creates more pain. Ugh...the cycle.
A phrase that's helpful when dealing with and understanding chronic pain is,
"hurt does not equal harm".
When acute problems are ruled out and chronic resides, yes, we hurt, but it does not mean we are harmed. It's a way of settling down fight or flight and catastrophizing.
I love the following diagram - it's a positive reminder of what we can control even when we feel helpless. In what ways do you help yourself feel more control?
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3 ReactionsI also have had Fibro. Since age 16; before they had a name for it. Just knew I had same symptoms as my mother. I'm 58 now. Jan.2023 went to get out of bed & fell down. Both legs with spasms & hard as a rock. The pain was overwhelming! After 4 days of crawling in my Apt.& in severe pain I called ambulance. ER also attributed it to Fibro. Saw my Rheumatologist immed. who ordered MRI Lumbar Spine. Told me spasms in lower extremities are always r/t back problems. The results were horrible with "Severe Foraminal Narrowing of lumbar/sacral spine". Basically what non-medical people call; pinched nerves. Can easily cause paralysis so after visits to Neurosurgeon, I'm facing surgery!
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1 ReactionMy God thats horrible!……I assume that your D andCalcium levels have been checked so they are not making your situation worse? So many times that is forgotten or overlooked. Topricin is a Godsend for topical pain relief too and something called Muscle Recovery. Salon Pas WHITE large pads….not the beige ones…..are massively helpful and will dull pain a lot and draw fluid out of the area with amazing speed. these are the cheaper ones , not the brown ones. I also take Valtrex, 1 full gram a day . It was first prescribed for chronic shingles but has the added mega bonus of very much dulling nerve pain and bumping up your immune system to boot !……After 40 surgeries you get a lot of tools in your box!. If you have a good old wooden cane in the apt. With a L shaped handle, if you turn it around and put your foot in the handle, you can very easily lift your leg onto a couch or bed or into the car which reduces pain on your back……has to be L-shaped handle! Take care….
Have you had a vit D , Calcium or
Magnesium, Potassium blood test recently?
Sometimes low levels of these can cause leg cramps,severe enough to wake you from sleep.
My leg problems have improved once I found out about the cell sodium/potassium pumps. My potassium was low. Electrolytes have got to be right or no other treatment will work right. Brain fog has even gotten better. Good luck
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1 ReactionSo sorry that you are suffering so. Two things help me a lot..one is Hylands Leg Cramos. OTC. The other is prescription it’s Cyclobenzapr and they both help me. I have horrible craps in my feet and calves. Good luck.