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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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Hello @leigh17. You're very welcome! It's an eye opening video. I'll be curious to hear your take on it.
I'm very sorry that you're suffering from chronic pain. When did you first begin having symptoms?
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1 ReactionI did have the EMG. I also recently had a brain MRI, to rule out the possibility of MS, even though it was at my request—the Neuro is convinced there’s nothing to indicate MS.
I actually just got the result yesterday (via the online portal that just drops info with no discussion) but I have not heard from the doctor.
This may sound funny, but I’m using my phone and I want to switch to the computer but not retype everything….
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1 ReactionI've had that. He said "there's nothing wrong".
Okay... so anyway.... the results of the MRI, from what I can decifer, are basically thus... "(the things that are indicated) could be normal from age, or it Could be (list of things, one of which is "a chronic demyelinating process...") . I already assume my doc will say it's fine. Which would be a relief if I didn't already think he's a schmuck. haha,
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1 ReactionHello, I thought the video was very informative. I have had chronic pain since 2016 after a cervical fusion and a failed shoulder replacement, as well as back pain that is worsening. However this new pain started about 4-5 months ago and is worsening. My EMG shows possible small nerve fiber neuropathy buy the cramping in my legs is getting worse as well as my back pain. Seeing my Pain Dr as well as primary this week . My hydrocodone is only taking the edge off. I also take 2400 g of Gabapentin a day.
Despite the nerve pain and muscle spasms, my first EMG at 5 months post vaccine was essentially normal. The EMG became abnormal at 7 months and continues to be abnormal. Autoimmune reactions take time to fully develop. Just in case this information helps you ...
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2 ReactionsI appreciate the info. I did have the vax, but I had these issues before it, so I don't think it's a reaction... though, thinking about the timing, the increase in severity maybe. Hmm
I've been having severe pain in my shins and the anterior tibialis (the muscles in the front of the leg, not the calf).
I'll make a long story short. After YEARS of physical therapy and lots of "it's probably arthritis", a recent MRI confirmed what my latest physical therapist and doctors suspected. My lower back is causing the pain.
To test this theory, I stopped putting pain relief topicals on my legs. Instead, I put it on my lower back. In a day or two, the pain was much reduced and bearable.
Do an internet search for dermatome and look at the illustrations. Find the area where your legs hurt. Mine was labeled L4-L5, which, oddly enough corresponded with what the MRI confirmed: bulging disks and facet joint arthropathy. My previous doctors were looking at the Xrays, CT scans, and MRIs for both the knees and the spine and saying, "Your arthritis isn't severe enough to cause the pain you're describing. Try Tylenol."
You might not have the same problem, but it's easy enough for you to check out (putting topical pain relievers on your lower back and seeing if that helps).
And yes, I've had the vaccine and boosters, but this pain started at least 4 or 5 years ago.
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1 ReactionHey there @leigh17, I'm sorry to hear of your failed shoulder replacement and worsening back pain. Nerve "excitement" makes sense given all your body has been through. That's why I felt learning about central sensitization might be helpful. You check a lot of the CSS boxes.
You mention seeing your pain doctor and primary this week. Have you seen a neurologist yet? They can order a skin punch biopsy to officially test for small fiber neuropathy.
I went down the same path, taking a narcotic for pain relief, and used your very words of "hydrocodone is only taking the edge of". Please be aware opiates can induce hyperalgesia as well, so when we think they are helping for that small window of time, they can in fact induce more pain.
You have a lot going on and this all seems to have turned your life upside down over the past 6 years. I understand how important it is to get situated in diagnosis first, but I'm wondering if you've ever considered going to a pain rehabilitation program like Mayo Clinic? Not a pain doctor or pain clinic, but a program that helps you with function over feeling by preparing you physically, emotionally and behaviorally. It's different than pain management docs and places that focus on meds, injections and procedures. Just a thought.
Hang in there, my friend, and above all else keep your chin up! Good luck with your appointments this week.
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2 ReactionsI've been having severe pain in my shins and the anterior tibialis (the muscles in the front of the leg, not the calf).
I'll make a long story short. After YEARS of physical therapy and lots of "it's probably arthritis", a recent MRI confirmed what my latest physical therapist and doctors suspected. My lower back is causing the pain.
To test this theory, I stopped putting pain relief topicals on my legs. Instead, I put it on my lower back. In a day or two, the pain was much reduced and bearable.
Do an internet search for dermatome and look at the illustrations. Find the area where your legs hurt. Mine was labeled L4-L5, which, oddly enough corresponded with what the MRI confirmed: bulging disks and facet joint arthropathy. My previous doctors were looking at the Xrays, CT scans, and MRIs and saying, "Your arthritis isn't severe enough to cause the pain you're describing. Try Tylenol."
You might not have the same problem, but it's easy enough for you to check out (putting topical pain relievers on your lower back and seeing if that helps).
And yes, I've had the vaccine and boosters, but this pain started at least 4 or 5 years ago, before COVID was a thing.
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