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Can anyone relate to this kind of leg pain? PLEASE HELP!
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anglake posted:
Hi. I am 49 years old, I have had Fibromyalgia since 1998. I have a very severe case and I have everything else that goes with it: MVP with moderate regurgitation, MCP, CFS, IBS, GERD, TMJ, PTSD, OCD, Migraines, Diverticulosis w/removal of my sigmoid colon. Chronic Dry eyes, (eye plugs inserted) Raynauds Disease, Two bulging discs in my neck. S/P-Total Hysterectomy when I was 36 D/T Endometriosis. Chronic Insomnia, Restless Leg Syndrome, Major Depression w/resistance to antidepressant medications. And of course, I have terrible cognitive dysfunction, sensory overload, sensitive to light, sound, chemicals, smells--you name it. I honestly could go on, but I think all of you understand my pain, fatigue and frustration. I do my best to eat right, healthy, all natural, walk, yoga, light weights. I haven't worked full-time since 1998 and have been on disability since 2000. I am an RN with a MS in Counseling and I'm Licensed in Massage Therapy. I'm educated to the Medical Community and have had my fill of "uneducated doctors." I usually end up teaching them, or walking out angry.
So-- on to my need for some advice. I have had pain in both legs, sometimes one at a time, sometimes both, since I was four years old. My older sister used to rub my legs with Rubbing Alcohol and then cover them with heavy socks. It helped sometimes. But other times, I would cry myself to sleep. Typical doctor answer: "Growing pains." How come the pain didn't go away and it's forty-five years later, and I'm pretty sure I'm done growing :) I'm not overweight. I am 4'10" and weigh 95 pounds. The pain usually starts when I've been warm and then walk into a cool place, it is a dull and achy pain. It hurts if a fan is blowing on my legs. I have to use covers even when I'm hot to stop the pain. I have to cover my legs when I go anywhere that may have a fan or air-conditioning. I sleep with a heating pad because it is sometimes the only way to rid the pain. It is always from my ankle to my knee. This happens almost daily and no doctor has ever been able to tell me why. Most of the time, they brush it off. I WANT TO KNOW WHAT IT IS. Does anyone else experience this type of pain? One doctor mumbled that it may be from my Raynauds, but didn't seem to care to find out.
I'm so sick of it all.....any reply will help. I wish all of you less pain
Thank you.
Angela

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angelldakota responded:
Dear Angela... I am sorry you have to suffer with this... I too have this pain... and I too have the Dr's disinterested or baffled...

My neurologist says it is neuropathy pain but it goes high on my legs... but then again I didn't know you could have neuropathy in your arms and your hands and your tummy either...

He has me on a med and I keep my heating blanket on my bed... actually now it is on the back side of it and I use my light comforter being it is so hot outside... but at least 4 to 5 times a week I still pull out the heating blanket for a couple of hours... Wrap my legs up in it and rest...

I have tried ice and it made it worse... at first the dr said to alternate the heat and ice... no way... no ice anywhere on my body...

yeh for years mine were growing pains... now I have growing pains in my back as my stomach keeps growing with the swelling and the water gain lol... but growing pain no...

I do notice that with the pain in my legs lately I am getting muscle spasms very badly... but that could be part of my MS... but once again they seem to only guess... no real answers when there are so many problems...

I too get very tired of Dr's not knowing or acting dumb... I have taken info in to my pc and she has refused to read it for I blame everything on FM now... I just wanted to see if she was interested enough to pick up the paper... she wasn't... and I rationalized that maybe she was right...

well... I have lectured enough lol... hope I didn't bore you lol... I can get on a ramble at times and tonight I am lonely and can't sleep... pain is up there a bit... lieing down sucks...

hope you are doing ok,.,, take care....
When you need a friend, reach out to a stranger and you will have one. If you need help, help someone else. if you need to cry, find someone already crying and celebrate life. Love Jan
 
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rudyandirmouse responded:
Hi and Welcome anglake. I'm really sorry that we have to meet you this way. And I'm so sorry to hear how you have been suffering. You seem to have so much medically to deal with my heart goes out to you. I don't know how much help I may be but I do so understand.

My DH and daughters have had the same/ like leg problem you mention. And it came most times in the evening hours or early morning. I don't know why that was. I took my girls to a PCP but should have gone to a Rheumatologist.

They suffered so much. My youngest would cry and scream from the burning pain in her lower leg when the flare up started.

My girl's pediatrician said it was RA and gave me a script for a cream but I didn't fill the script. My mother in law told me about a home remedy: Vick's. She had used it for my DH and his sisters and it worked so I tried it. I rubbed it on their legs and wrapped the the legs in flannel cloth. Within a few minutes the pain went away and in no time the girls were either playing or fast asleep.. pain free.

It worked so well back that it's all I ever used. i got lucky because later on my daughters grew out of it and neither my DH or I have ever had to deal with it since. But all we ever used was the OTC Vicks Vapo Rub for it. Not sure what was/ is in Vicks that helped but, for us, as I said, it did.

And I am not sure what would be out there now for the leg pain. A Rheumatologist sure would know. Are you seeing one? If not he would be the one to talk this over with. As I sure understand how much it hurts

I wish I could be of more help.
Keep us posted as to what you find that helps you feel better and I do hope that is soon.
Soft hugs going out to you.
Linda R.
 
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anglake replied to rudyandirmouse's response:
Thank you ladies for responding. I'm sorry that you, too, suffer from this pain AngelDakota. Wow Linda, my Dad and older sister grew out of this type of pain as well. I was the lucky one. LOL. I have seen a Rheumatologist, who doesn't know what it is. I think it is time to find another one. I am so determined to find out what is causing this and why I've had it for so long without a diagnosis. Thank you again for taking the time to respond. I hope you can sleep tonight Angel. Thank you Linda for telling me about your Mother-In-Law's "vicks" treatment. It sure can't hurt to try it and it is safe.
(((((hugs)))))
Angela
 
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NeNe_11 responded:
Same thing, except this type of pain only started about 5 years ago(have had fibro for 10 years). Doctors cannot tell me what it is so I chalk it up to one of the many different fibro pains.
Take Care,
Denise
 
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fibrosux responded:
So sorry to hear about your leg pain, I know exactly how you feel. Plus, I had to take my daughter (also diagnosed with FM) to the ER two times this month due do excruciating pain in her legs. It was so frustrating and such a waste of time. She went to her specialist appointment and he said he thought it might be the Lyrica she is taking...have you started any new meds lately?

Anyway, I'm excited to hear about the Vick's remedy and am going to tell her to try it tonight.

Best of luck to everyone. We are the only ones that understand the amount of pain this dang thing causes, and how the pain moves to different parts of our bodies.

My mom always says if they can put millions of dollars to research the mating of bees, why can't they commit to finding a cure for this debilitating disease!


Selena
 
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Rosemgl responded:
Gee someone just around my age height and weight, I know how you feel. I was told my a Rheumotoglist several years ago to see a Psycharist, left in tears, knowing that I was not imagining the pain, 15 years later, the pain is so severe, that even getting out of the shower if it is cool can cause so much pain. The air conditioning when we have company, can be agonizing, I have both a heated mattress cover and an electric blanket. When I can I do walk, and it does help in between flare. My Husband bought me a cute dog, Yorkie, so knowing he would need to be walked, I took on the challenge first only a block, then two, soon around the neighborhood. It was not a cure, but, it has helped. I still have flare-ups and then it's back to a block or two and work my way up. This little dog has been my companion, on those days when all one call do is cry and try to get out of bed. Have you been tested for Lupus? Good Luck, Angela, and I truly understand all your pain.
 
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kkai508 responded:
My late husband worked in the entertainment industry in Los Angeles, this enabled me to access a high quality of care. I was very blessed to have been treated by one of the top Fibro specialist in the world and learned tremendously from him. The best advice was to use Arnica Gel for the pain in my legs. This gel is used by cosmetic surgeons to ease the pain and to speed healing. Like most topicals, you cannot use it on broken skin, but this has helped me tremendously. It dries quickly, doesn't smell, etc and was a big plus when I needed to be in public but also needed that help with the pain.

Unfortunately, my quality of care dropped significantly when my husband passed away and I moved home to Texas to be near my parents. The Arnica Gel has gotten me through months when I had no medication otherwise.

As far as what causes us to hurt so much from the cool air or other triggers...it was explained to me as a type of side effect of rheumatoid conditions. Our muscles, like the nerves that are effected by Fibro, are hypersensitive. Sudden temp changes, position changes, anything almost will trigger the muscles to draw, ache or spasm instead of relaxing. It can effect any part of our bodies and some of us seem to have more severe pain than others just as we do with Fibro. Mine is bad enough that I used Fentanyl patches for years as well as Lyrica and Mirapex. I was able to function normally.

Currently, my
 
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kkai508 replied to kkai508's response:
Oops, I wanted to add that currently my assigned PC feels that Lyrica is a cure all for Fibro and I am now homebound. I'm waiting for a referral to a rheumatologist. I also have Dysautonomia where many of the automatic functions of our bodies malfunction and Adrenal Failure. Parkinson's, MS and a number of other conditions including Fibro are part of this Dysautonomia. I would recommend discussing Dysautonomia with your doctors in case it's a factor also.

I hope this helps some as I know how very frustrating it is when your doctor either won't listen or is unable to help
 
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geneticallyweak responded:
Yes I have had leg pain since i was young and was told growing pains also. My pain varies and comes on at will stays for no specific length of time the variations of pain and onset baffle me. sometimes it feels like roots are growing in my thighs and ripping through the deep tissues and mussels my legs get weak and heavy i usually feel very tired at the same time. I also get skin sensations that feel as if i have been scold or severely beaten making touch painful,I have fibromyalgia too.
 
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anglake replied to geneticallyweak's response:
Dear Geneticallyweak,
Thank you for your response. I feel for you and so understand the pain. My pain is more of a dull pain, but constant. I do, however, have the same kind of pain you describe in my muscles too. Some mornings when I wake up, I honestly feel like someone came to me in the middle of the night and beat me with a bat. I feel that kind of pain in my neck, shoulders and head. Baffle is a good word in this case. Baffle should be the new name for Fibromyalgia. I still feel that this type or quality of life is NOT worth it to me. I'm glad you responded.
Angela
 
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anglake replied to kkai508's response:
Dear kkai508,
I'm sorry it took so long to respond. I'm nursing a cold right now. Thank you for the advice. I will mention Dyautonomia at my next doctor's appointment. I really need to go back to a Rheumatologist. I used to see one, but we don't have very good ones in the area where I live. I usually see a pain specialist, who is great, but not exactly current on Fibromyalgia. He usually does RF on my neck when I have severe headaches that never go away with the RF treatments about every 6 to 8 months. I am sorry you suffer from so much. I totally understand. I have given up a few times in life due to all of this, but God just doesn't seem to want me at this time.
I have used almost every pain medication, muscle relaxer, etc. out there and nothing has touched my pain. So why keep destroying my liver and kidneys? I am already doing that with the other medications I take for other ailments. Like I said, a heating pad is my best friend.
I am home bound because it takes too much effort to leave.
I appreciate the time you put in to respond to my pain. I will keep you in my thoughts.
Angela


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