Horrible leg pain with fibromyalgia

What type of pain are you having in your legs? I have fibromyalgia, arthritis, ankylosing spondylitis, and scoliosis. I have lived with chronic pain for about 40yrs, since I was around 20yrs old. I have had different kinds of pain in my legs-like super burning pain,like having someone hold a fire on my leg. I take gabapentin for this neuropathy pain. The next kind of pain began around my hip area and went up my leg to my back and down my leg to around my ankle. This is sciatic pain. This is one of the most horrendous pains I have had, and actually goes from the back, down through your butt, and then your hip,and then leg. The only thing I could do to help my pain in my butt was to sit on my hand. No one can understand this pain unless you've through it. I'm not sure you want to tell me, but I was curious as to what you weigh? I started my weight loss journey (yes it is a journey) in 2006, and I weighed right around 600lbs. I started on a low-carb/high protein diet, and in 18mo I had lost 200lbs. Then in the next 9mo, I gained 50lbs, and in the next 3 1/2years I lost 20lbs. So, in 2012 I had gastric bypass surgery, and lost around 250lbs, and I lost all my weight not being able to walk. Over the years since my gastric bypass, I have had both knees replaced, both hips replaced (with my right hip I had 2 dislocations, and got an infection in my hip, so altogether I had to have 7 surgeries on that hip and spent around 2mo in the hospital), and after being able to go home, I then after all that I ended up with a blood clot in my right leg, so I had to go back to the hospital for another week. I also had my right shoulder replaced. I have also had abdominal surgery to remove my excess skin, and I had to have abdominal surgery for an internal hernia where my small intestine was bunched up in a small space and causing severe pain. For the last couple years I have been struggling with my weight and have gained probably around 50lbs. I am just telling you all this to let you know that I can certainly relate to what you are going through and how you are feeling. I have depression and take meds for that, and I continue to struggle with my weight every single day. I deal with depression a lot because of my pain and because I don't sleep very well at all. One of the biggest problems I have is the changing in the weather. Everytime the barometric pressure changes my body screams out in pain. The colder it gets, the more I hurt. If you would like to stay in touch, I would like that because I know that depression and pain are easier when shared with another person who understands. I hope that this helps you some. God Bless You!!

Yes, I have experienced terrible leg pains recently. The back of my upper thighs are "singing" all the time. When I wake up, I am so stiff, I can hardly move. I have severe fibro along with arthritis throughout my body. I still do my daily walks, but it makes me experience lots of pain. I know if I don't move, it will only get worse. I have tried medications, but found that I am very sensitive to over 43 of them. I have also had over 30 surgeries (both major and minor). I am hoping when I am finally able to see the neurologist, she will have some suggestions.

@bookahol Im so sorry you have so much pain . I also have fibro, arthritis all over 2 fractures and my thighs burn in pain all the time I cant do any meds as Im to sensitive to them So have you tried Epsom Salts? I use this and it really does help on my thighs, legs . Also just hot water which opens up the blood vessels and helps with the pain in muscles. Ice, heating pad have you used all these tools to help when I go for a walk daily I do take my pain med 20 minutes before I go out . Hope you find something to give you some relieve . Dont do any strenous exercises just stretching and light exercise .

Thanks for the reply. Unfortunately I am not able to soak in the tub, so the Epsom Salts will not work. I do use ice and a heating pad. I have had no luck with pain meds. In fact two of the meds on my list caused me to either stop breathing and/or have dry heaves. I guess I am not a good candidate for medications.

@bookahol I cant soak in the tub either so I just soak a washcloth in sink and apply till it cools of then repeat where I need it . Also vinegar apple cider vinegar does same thing . If you can stand the smell

Thanks for the suggestion.

I’m sorry to hear about the extent of your fibromyalgia and arthritis. I also suffer from both of these conditions and have problems with pain, numbness, tingling, pins and needles in my lower legs on many days but not an extreme level. I am wondering what you are hoping a neurologist can offer as it may be something I will need to pursue when this becomes intolerable. Thanks for listening.

I don't quite know what the neurologist will suggest. I tentatively have an appointment in June. I will share what I learn.

I hear ya on the fibro pain, I can't make it through the night without pain and burning in my legs and neck. I wake up around 3:30 am all in a painful bunch, totally exhausted in the morning to the point where I get up, have breakfast and have to go back to bed, in the evening I feel somewhat normal. Soak in Epsom salts, take Xanax and mirtazapine and melatonin to get some sleep. Anxiety is through the roof with a brain tumor that they want to do radiation on. It has caused vertigo so I can't do much walking. Anything can flare a fibro/CFS attack. No matter what you do it is always there and I am highly sensitive to meds so other then the Xanax I can't take anything. I've spent over 30 years suffering with this and nothing helps. Hang in there, I would like to say better days ahead. I do know people who recovered completely or they didn't have it in the first place.

Thanks for your reply. I sometimes don't know if I can make it through the day. I have a high tolerance for pain; however, this pain in my legs has almost done me in. The bad part is that you look fine and feel terrible. I get no sympathy. I would just like some understanding that many times I just don't have the energy or will power to do anything. It makes you cranky and out of sorts. I also have trouble sleeping. I have sleep apnea so don't like wearing a mask all night long. I rarely have any nights when I don't wake up multiple times. To top it off I have hot flashes, even though I am 74. Ugh!