Constant excruciating leg cramps

Posted by lfisher66 @lfisher66, Jul 16, 2022

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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I run magnesium gel on my leg cramps and they stop Rt away.

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Have you seen a neurologist? If all the blood tests for electrolytes etc are normal, I would see a neurologist and question whether you could have stiff person syndrome, a rare condition that causes severe muscle spasms. Celine Dion has this and it took years to get diagnosed because it is so rare. NORD has information on it. Not many doctors know about it so if you get no answers you might want to go to the Mayo Clinic, or a similar place that will get to the bottom of it and help you. This sounds miserable and there has to be some solutions for relief!

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@rwinney

Hello @lfisher66. You played woman's pro football for 20 years!?! That's incredibly awesome. Scared of you! Indeed you were active and a go getter from the sound of it. I used to be too, in a different way, but I get it. I'm 52 and my overachieving, go getter A -Life days are gone. Unfortunately, I lived my horrid B-Life for about 6 years...ya know, kind of like you're living now, unstable, chronic symptoms, deconditioning, sensitivities, a merry go round of meds and side effects, depression, anxiety, stress, and doctors having no plan of action.

Long story short, for the past 1.5 years I've been discovering my C-Life which has taken a lot of hard work, refocusing, regrouping, recommitting and shifting gears to a much more stable, moderate and flexible path forward. Yes, I still live in chronic pain, but I'm more equipped to manage it and find that life can be more than the B-Life. There is hope, you've just got to find it.

After reading your posts, I learned that you are stuck in a terrible cycle of doctors going in circles and not being able to give you better answers other than,"it's your fibro", or "will the pain away". I know how much that hurts the soul when you're suffering and practically begging for more answers or help. Regarding the purpose of your new thread...have you tried muscle relaxers for your awful cramps? How about gentle daily stretching? As much as it hurts, keeping your body moving is the best thing you can do. Do you mind me asking how you're dealing with your emotional trauma and depression?

So much of your situation speaks to me and I think it would really be worth your while to check out this video by Mayo Clinic's Dr. Sletten. He presents on Central Sensitization Syndrome (CSS) which explains how the central nervous system can wind up causing an upregulation, resulting in popcorning chronic pain and symptoms.

Here's the video:


Please keep in mind when watching that CSS covers a lot of territory and not every single bit applies to each person. Watch with an open mind and please let me know if you think CSS may answer your frustrations of "what" and "why", especially when your doctors can't.

Lastly, I want you to know that I believe in you and think you certainly possess perseverance and discipline as proven by your past A-Life. That tells me you've got what it takes to get yourself through this not so pleasant, challenging B-Life, and work your way towards a more productive, stable C-Life. You just need help and a plan. Please let me know your thoughts on what Dr. Sletten has to say about central sensitization. Do you think any of it applies to you? Do you have questions for me abut my journey with CSS?

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I want to thank you for your post. I have had FM for 40 years - perhaps longer. My family is the worst in understanding chronic VS acute. All of what you and @lfisher66. said has been me. There were days I was in so much pain and many times it would be totally in a different place. I've had all medications and the side effects to the point where my vision was going. The worst was being told I needed antidepressants. I have never been depressed, even with pain and the side effects were vicious. I am frightened of taking pain killers because of addiction but my wonderful rheumatologist understands. I loved the video, Here is a doctor who does understand the pushing and crashing. When one gets so few good days you want to do as much as possible when you feel better. The cramps are the worst. My whole foot cramped one night and I could not stretch it or rub it, nothing but try to walk. My physiotherapist told me to try a ball under my foot, fantastic. That is all it is, try different things to get past the pain. Thanks for that video and best to @lfisher66.

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My MS is (among other things) spasms and cramps, it's terrible. It has locked up body parts for years at a time.
I had to research because they would do nothing but offer pain killers which I have allergy too, so excruciating.
Good news, they found out GABA that releases spasms, is made on the nerve dendrite. It makes so much sense to have had increasingly severe spasms because of MS.
Luckily, I can buy GABA for cheap at healthfood store knock wood.
Trick is, needing an expert on how to come off the gabapentin and start taking gaba.
But get diagnosed first.... and carefully to change meds because it's serious.
Long story short, muscle spasms should be a way to diagnose underlying dendritic malfunction.
I started with the gaba and I got emotional because the nerves in my brain were also spasms (felt like ptsd that was finally melting).
Other people have had no such issues with gaba, just sleepy. I don't have that ptsd feeling or the emotions about it after the first 2 weeks, and it took over a year to get relief in my gut spasms because I was only taking 600 mg a day. My hands stopped spasming on that dose, but couldn't do much.
Had to increase my dose. Upwards of 2000mg. Day, please be cautious because even though it's the known spasm relief (look it up pub med says the hospital should inject gaba gor spasms ), and it's taken orally so lower absorption rate, still can cause drowsiness, and will probably have to take it continuously to keep spasms at bay. And they still happen, but it releases predictably. Not cure. Talk to Dr.
Lots of people I talk to are using upwards of 3000 mg per day, just for pain, and it's working.
The recent Intel that it's made on the dendrite should be the kicker. Good luck

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@irr4et

I run magnesium gel on my leg cramps and they stop Rt away.

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What is the brand of the magnesium gel that you use? TIA
😀

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I am curious about your “false” positive for lupus. Can you please elaborate on that and whether you have been tested for lupus since? Why did Dr think it was a false positive? Do you know what the ANA titer and pattern was? Many people with autoimmune diseases get diagnosed with FM early on and never reevaluated again. BTW magnesium and calcium are both neuromuscular sedatives and even if serum levels are ok, supplements of both can help spasms. I would try up to 800mg Mg and 1200 mg Ca a day before bed since that’s when spasms are worse.

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@1kay2

I want to thank you for your post. I have had FM for 40 years - perhaps longer. My family is the worst in understanding chronic VS acute. All of what you and @lfisher66. said has been me. There were days I was in so much pain and many times it would be totally in a different place. I've had all medications and the side effects to the point where my vision was going. The worst was being told I needed antidepressants. I have never been depressed, even with pain and the side effects were vicious. I am frightened of taking pain killers because of addiction but my wonderful rheumatologist understands. I loved the video, Here is a doctor who does understand the pushing and crashing. When one gets so few good days you want to do as much as possible when you feel better. The cramps are the worst. My whole foot cramped one night and I could not stretch it or rub it, nothing but try to walk. My physiotherapist told me to try a ball under my foot, fantastic. That is all it is, try different things to get past the pain. Thanks for that video and best to @lfisher66.

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Hi there @1kay2. Thank you for your considerate reply. I'm so pleased you found benefit watching Dr. Sletten's video. It's quite amazing, isn't it? Definitely was a game changer for me- helping feel heard and understood but more importantly presenting some sort of a game plan to move forward despite chronic conditions. Living with such builds character and takes a lot of inner strength especially for someone like you who either can't or chooses not to take certain medications. And ah yes pushing and crashing, if you're anything like me, you do it to yourself sometimes, despite trying to not. We are human...give grace.

More power to you in your journey ahead and thanks for sharing some of the tips you're learning like trying a ball under your foot. Are there any other strategies or pain management tools you find helpful?

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@felicelinda

What is the brand of the magnesium gel that you use? TIA
😀

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Designs for Health on Amazon. 😊

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I have a previous reply that explains how GABA is the neuro relaxant that actually releases the nerve spasms. GABA from health food store. Talk to Dr, but the hospital is actually supposed to inject gaba to release muscle spasms, but they don't seem to do it in my country, so I take it orally, please discuss w doctor, but has been used for pets for years, is in near beer in England, etc. It's a thing, it is the thing.
Spasms are very terrible and painful..
Need expert opinion if weaning off gabapentin and starting gaba

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@tabuschlen

I have a previous reply that explains how GABA is the neuro relaxant that actually releases the nerve spasms. GABA from health food store. Talk to Dr, but the hospital is actually supposed to inject gaba to release muscle spasms, but they don't seem to do it in my country, so I take it orally, please discuss w doctor, but has been used for pets for years, is in near beer in England, etc. It's a thing, it is the thing.
Spasms are very terrible and painful..
Need expert opinion if weaning off gabapentin and starting gaba

Jump to this post

I suffered fro terrible leg cramps, thighs ((the worst) , calves and feet . Extreme heat helped, however I read Dr. Grundy’s book and he recommended
Magnesium potassium asportate caps found at the health store. That helped tremendously and I take it every day. Cramps are now rare.

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