What is up with my leg?

Status
Not open for further replies.

lyrin

Active member
Joined
Oct 25, 2017
Messages
38
Reason
DX FIBRO
Diagnosis
10/2017
Country
US
State
OH
I don't know if this is fibro or not since I do have a degenerated/herniated disk L4-L5. I have so many issues I can't keep any of them straight.

Yesterday I kept feeling my left thigh vibrate. Not like normal twitching I get all the time. It almost felt like the vibrator on my phone was going off on my leg. Coming and going all day.

Today I was sitting at my desk and all of a sudden my left leg goes pins and needles really bad. The entire thing. I was sitting normally. I had a mini panic attack and tried to walk it off. Didn't work. After a while it subsided.

Does this kind of thing come with fibro or is it probably my back (which I was told no one could do anything about).
 
Lyrin. I too had degenerative, herniated discs my l4-s1. I have had two back surgeries with permanent nerve damage on my left side l3-s1. My first surgery was emergency surgery because my bladder stopped working from the nerves getting compressed.
What you are describing sounds to me more like nerve pain that is originating from your back. Pins and needles ar fairly common for that type of nerve irritation, usually due to compression of the nerve. as for the vibrating, I can get that also in my left leg.... it's almost like a continual spasm, not painful and I don't see any twitching but it feels like its a dialled down version of it if that makes sense.
Have you had a discectomy? Or a fusion? Any surgery?
When you say that you have been told nothing can be done, was this by a specialist?
I have a friend that also has l4 l5 degenerative/herniated discs, he had a fusion and now does not have the nerve pain anymore.
You might want to seek out another opinion.
I also recently met a girl who got thrown from her horse and they said she would need a fusion for her l4-l5. She went to Mexico and got stem cells put in her spine and did not need the fusion nor does she have pain anymore! I didn't even know this was possible!
 
I told my doctor about my back pain after my accident. She sent me to a pain doctor who took an MRI and said 'oh it's not bad lets do shots" So I did 4 or 5 steroid injections to my spine and one nerve block. (of which I had a minor improvement for like 2 weeks) I did 9 months physical therapy. I tried a chiropractor. I've used heat and cold. I have an inversion table.

After all that my pain doctor said I can't help you, see a orthopedic (is that the right word?) surgeon. So I got the referral to the surgeon. He listened to my symptoms, looked at my MRI and goes "I don't know what I can do to help you. I don't see anything on this MRI that I can fix and your symptoms don't match. Lets get a cleaner MRI." So I went back to my PCP and told her. She said nerve pain and put me on gabapentin. When that didn't work I went back to the pain doctor. Who told me fibro, put me on muscle relaxers, and told me to talk to the rheumetologist in December.

As a note: I have 8 piercings. Which they demand come out. (they do NOT need to I have already had 1 MRI with them in. As another aside I have a metal allergy and all my piercings are surgical grade titanium) Having another MRI would be a pain and I doubt it will show anything "new" because nothing has changed. So I'd have to buy spacers for all my piercings, some of which I can't put in on my own very easily so it would be a trip to my artist to put in spacers. Some may last if i just took them out but others like my tongue may close very, very quickly.

But I guess I should probably seek another opinion. I'm afraid of finding a doctor who just wants the money from a nice back surgery. Doubt I will be heading to Mexico though. And time off of work. And recovery. And I read the surgeries are hit or miss AND that they get rid of the nerve pain but not the back pain. I have sever lower back pain. But my pain doctor won't actually give me pain medication because he doesn't want to "interfere" with my other medications.
 
Lyrin. Sounds like you are in a tough spot.

Regarding the piercings. I too have a piercing (titanium) and have never taken it out. I have had at least 8 MRI's with it in. I also have two titanium rods in my back and one in my lower leg, can't exactly just take those out like a piercing. In fact I just had MRI today and when asked about my piercing, I said it's titanium and he said ok it can stay in. perhaps your dr can put a note on your chart that they are surgical titanium and therefore do not need to be removed?
Yes, that is the correct surgeon. I would totally get a second opinion. And I am in no way trying to push surgery. You are right, it can be hit and miss. I know people who have done very well and others who have ended up in as much or more pain than before the surgery like myself. But it sounds like you have tried just about everything else without any results.
it's funny how some Drs push pain meds and others won't touch them.
Do you have a TENS machine? I find it helps me with my back pain and even the nerve pain. I use mine pretty much daily. My daughter has my lovely back issues as well and has good luck with the Tens as well. Again, this does not seem to help everyone, but might be worth a shot.
 
My only other suggestion for the pain would be to try medical marijuana if it is allowed where are, I know the states are starting to change on this.
For me it was either Fentanyl or MM and I was not going anywhere near Fentanyl. I won't lie, there are days I miss my Morphine ( allergic to opioids now) but the MM does help to alleviate some of the pain and the depression that seems to comes along for the ride,
 
Wow I was just talking about buzzing nerve on the other post earlier today. :shock:

I get that buzzing nerve in my legs all the time but I don't have degenerated disk. My leg buzzing away especially when I try to go to sleep. I'm used to it during day, but going to sleep with it still impossible so I often eat a few brazil nuts just when that happen since it packs lots of vitamine/minerals including selenium it usually help claim my buzzing before sleep. During the day is quite a different task, and it usually comes with fatigue. So it need to be treat together to stop the ongoing buzz.
 
My advice would also be to try medical marijuana (if you are lucky enough to be living in a state/country that has it :)) and try that for pain relief, if no other medication helps.

This is so frustrating about fibro, for so many pains and weird symptoms, one simply does not know if it is fibro related or something else. And such sudden onset of symptoms, like you experienced, can be such scary experiences. Not only do you want to know what it is, but you also want a solution. The doctors often don't seem to help out with neither.

But on the topic of surgery;

I've had 2 failed neck surgeries (both emergencies; first artificial disc replacement, then fusion and my last surgery was a very traumatic experience, so I tell anyone and everyone to hold off on the surgery as much as possible (of course if it is an emergency, there is no other option, but please do research on the techniques, the doctors, the hospital, the after care as much as possible).

I live in a pretty conservative country, yet the last rheumatologist I saw also admitted that he was reading a lot of promising studies on medical marijuana and wished he could prescribe me some. In the meantime, I am trying out CBD oil, am not sure whether it helps or not yet. :)
 
Interesting that this thread would come up because I have had a very weird leg thing going on all week. I don't know how to describe it, really, except to say that it feels as though my leg and foot is just about to go to sleep all the time.

You know, that feeling that tells you (if your body is normal) that if you don't move it your limb will soon go into the pins-and-needles of falling asleep? That sensation. Only moving doesn't help, standing doesn't help, massaging doesn't help, nothing does. It even feels just a bit as if my leg and foot are sort of disconnected to my body. It is hard to explain but maybe you know what I mean.

I also have degenerative disc disease in my back, and my back has been hurting a lot lately. So maybe that is the cause. thanks for bringing this up.
I wish I could use MM. It is legal in this state but my doctor will refuse to treat me if I use MM. I even get drug tested at the Dr's office to make sure I am not using MM or anything whatever that he did not prescribe.
 
you will finf fibro has so many weird symptoms. Its not all your imagination. I hope you find a compassionate Dr. Good luck.
 
Hi lyrin...there is a whole thread talking about buzzing vibrating sensation recently maybe that will help explain as fibro really knows no bounds.

I have it literally all the time and causes me burning pain that moves around all day and night including interstitial cystitis and vulvodynia symptoms too. Its truly the most horrible painful part of fibro i have.

Hopefully if yours is a new symptom for you and no pain involved it will go off again.
 
Last edited:
Status
Not open for further replies.
Back
Top