Has anyone else ever experienced this horrid problem. I have Fibro was diagnosed 5yrs ago but have had pain since a kid. Some night when trying to sleep I will get this horrid burning dull ache in the hip im not laying on so Ill switch to the other side and the other hip will start to hurt,,eventually they both start to hurt and I end up in odd positions trying to get comfortable. Also when I get this I will have cold sweats Ill be really cold but sweaty. Im wondering if it could be the weather change since it was really cold in my house this morning or what the deal is. Has anyone else had this problem. If so I would love to hear about it,,what it could be and how you deal with it. Any suggestions or feedback would be greatly appreciated. Thanks Rae
Hey girl....yes, this happens to me also, sometimes I try to roll over and I can feel the tendons, they feel like they are scraping against my hip bone which stops me in my tracks and I have to catch my breath before I can continue to roll over. I really thought that once I lost weight my pain would decrease, that is not so. The pain I have in my hips feels like someone took them out of socket, added sand to the ball joints and put them back into place with fire added to it. I have also been breaking out in cold sweats but I haven't paid attention to what pain it might be associated with it. When I get my dizzy spells I sweat so bad though. Like I said, I can be sitting down in the a/c and they happen.
Sorry I don't have any answers on how I deal with it. I just take it in stride, or try to.
Yes it is....have you had the skin burning yet? That was one of my first symptoms. I haven't had it in a couple of years. It was so bad that when I would go to my dr. appt. my doctor could not touch my lower back to put the tape measure on me. I'm so glad that symptom is gone. The hips were my second symptom and it has NEVER gone away or let up. They constantly hurt. Have you had your bones hurt yet? My leg bones hurt so bad sometimes it feels like they are breaking. I can't cross my legs, to put any kind of pressure on my shin bone feels like they are going to snap any minute.
i have this also, started in the last year. I also have Osteoprosis in the Left hip but this in mostly in the right hip. It seems to be in the joint ( side ) and also have Knee pain, off and on. End up sleeping on the Left hip because being on my back is not comfortable either.
Oh yeah my skin burns like crazy if I barely rub my skin especially on the back of my arms I get this horrible feeling,,I always tell my husband "dont touch my arm like that my skin hurts",,he thinks its all in my head,,,,,my bones are so sore really bad in my legs and my forearms,,,,I also have severe neck pain and muscle tightness it never goes away no matter what I do,,I could be dosed with all the Dilaudid in the world it still wouldnt work. The Sub so far is been really good with my pain but what the hell can I do about the other sypmtoms,,,the "lazy feeling syndrome" and the foggy,hazy brain and feeling like Im always in slow motion. when does this all stop how do I get rid of it.
After years of doctor exams across the country (including John Hopkins, NY HSS, Columbia / Cornell, Mass Gen) and many many many blood tests, x-rays, bone scans, MRIs, lip biopsy, synovial fluid biopsy, etc.. etc.. I have been diagnosed w/ Reiters Syndrome, Fibro and Chronic Fatigue. My ID doctor has me taking Famvir (an antiviral drug) to work against Epstein Barr Virus. EBV could be responsible for my fatigue and Fibro. EBV antibiodies stay w/ you for live. However, there are different IgG measurements which will show if the virus is active or latent. Might be worth looking into? Just a thought.
Also -- I forgot to mention -- I just started taking Lyrica for Fibro. The FDA approved the use of Lyrica for Fibro late last year. Also take Tramadol / Ultram for pain. Xanax to sleep at night. Good luck.
I completely understand what you're talking about. I have the hip pain also but I can hardly open a water bottle without it feeling like my skin is being ripped off. My solution is to use one of those jar opener thingies or just have someone else open it for me.
As far as your leg pain...I use a topical product called Sombra. It has no capsasum (I know I am spelling that wrong) in it which is great since I am allergic. It works wonderfully in conjunction with my pain meds. I don't use it on the burning spots. I only use it where I have joint/bone/muscle pain. I think you can find it in some health food stores but they have a website also. It is http://www.ithacasports.com/sombra.html
I hope you feel better!
thank you for the responses it is a big help knowing everyone elses helping mechanisms. I know it could just be the Fibro kicking it when its cold,,like it was this morning in my house especially after being so hot the days before.
The capsacian cream (i know im spelling wrong too) was sooo wonderful in bringing down my muscle spams but ended up waking me up in the middle of the night the first night I put it on in agony,,I felt like my neck and back was on fire,,,I had to scrub it off with a washcloth full of soap. Although it worked wonderful for my grandmas arthritic hands.
I have been taking the Lyrica for over a year now off anf on because my INS wont pay for it,,so my Doc gives me samples as he has them which is horrible becasue I dont want to take them and then be off of them,,,so this last visit I told him I would just wait and see if my INS accepts payment for me to have the script,,I also just startes taking Suboxone which has been so far the best thing that has helped any of my pain,,but Im only taking that to withdrawal off of the horrid Methadone I was taking for pain.
With pain your always in a catch 22,,,,Thank you for all the advice it gives me some ideas of what could possibly be going on with my darn hips. Thanks
The lazy feeling with the fibro fog. If I could just combat those two symptoms I think I could live with the pain, not without my meds of course but if I could just get up and do something it would make me feel better about me. Just this morning I woke up, opened my eyes and knew that it was going to be another one of those days. I just don't feel good. I no longer tell people in my house I don't feel good, I know I get sick of hearing it myself.....BUT, I'm so sick of not feeling good!!!
I do the same thing,not telling anyone in my house how I feel because its a daily thing and I know my husband is getting sick of hearing it although last night I did talk to him about my hips,,,he never knows what to say.
It really bothers me that I dont feel comfortable telling my husband daily the pain I am in or how bad i feel in general,,I dont want him thinking Im just sitting on my butt because Im lazy but I know he doesnt want to hear my complaints all the time.
Hi! I have experinced the hip think and the cold makes everything worse. In the winter ( worst season for me) I use 3 heating pads in different places, a feather comforter, sleep in a recliner to ease pressure on the trigger points. If might help to try this.
You just brought something up,I didnt even think of the possibility of the hip pain being from the tender points we have there on our hips with having Fibro. Thats probably what it is and laying in my recliner sleeping doesnt cause the hip pain because my tender points are not being triggered. Thank you for bringing this up.
That is a good point that I had not thought of either. The hip pain is really bad, but look who I'm talking to. Of course you all know that. Someone talked about the burning skin pain. Has anyone ever hurt to wear clothes? Only one time in my 9+ yrs of fighting this, I hurt so bad one time that clothes touching my skin even hurt. This was scary.Does anyone else get the same pain in the hip, elbow, and shoulder of the same side you are trying to sleep on? Now that it has been mentioned, I bet all this is the trigger points, Huh? Someone also mentioned tendons. I have really bad pain in my right leg at night and when I stretch it out to help relieve the pain, it feels as if I'm about to get a really bad cramp or that it's pulling everything so tight in there.
I do get the burning sensation on my skin when my clothes rub against my skin especially my inside arm near my elbow,,,When sleeping the tender points are being pushed on thus causing pain and its funny this just came to my/our attention lol.
I have been taking Lyrica off and on for over a year and it works great for me,,others I have heard not so good and also the effects people get when they first start taking it makes them stray away from the drug. I had the wierd feeling,,the panick when I first started taking it but that did go away and I have not had one side effect and it works wonders for the nerve pain,,burning and all the comes along with.
How long did it take for the wierd feeling and side effects of Lyrica to go away when you started taking it? I guess my question is how long should you take it before deciding the effects are not going away?
hi,,i took it for a week and a half when the side effects were fully gone and then it was like taking tylenol i felt no difference. It was worth the wait and dealing with the effects,,the relief is wonderful. My doc told me to give it two weeks. Good luck and let me know what you decide.
I just joined this frum and read your initial post and was astonished as to your symptoms. They are shockingly similar to mine and I've just brushed them off as getting older, but amazingly when I was diagnosed with fibro six yrs ago I thought my doc was a Quack and now I'm slowly realizing that maybe he wasn't after all. I thought this about the fibro answer he gave me to all of my complaints: What a Dumb A** this is just a way for the doc to get out of actually finding out what is truly going on with my body. But now I feel alot differently. Thanx!!!! Your the best!!!!
I gave Lyrica longer than that twice. I thought maybe it was something else after stopping it the first time, so about a month later, I tried it again w/ same effects. It did help a lot. I could really tell but the side effects (for me) were not worth the relief it provided. I am so glad that it is able to work for some people. Like I said, I did feel the relief it provides. Side effects for some people on some meds can just burst that bubble of finally getting some relief. Maybe they will come up w/something soon that everyone can take w/out any side effects (what do we have if we can't dream, huh?).
This is the very first time I have ever posted or talked of my fibro. I was diagnosed 24 years ago,2 tmj surgeries and a million lidocaine injections later. I had an absolut angel of a Dr. and I unfortunatly mean that literally as he passed of cancer at 49. I was beyond devestated but I fight this for him now. I have always lived with the outlook that the fibro has to live with me..I do not live with the fibro. I just started the burning hip pain. as always I hoped it was from too much excersise or too much bike riding but I see from the posts above it is a fibro symptom. I guess I will wait to use my new roller blades..lol. To all of you who dont want to get out of bed in the morning my heart goes out to you aIl I have been there and will be again. The one thing I learned is keep pushing, keep moving, ive been to hell and back like most but I lead a very normal life and most wouldnt know I have fibro if i dont tell. Yes I have my weeks of immobility but with the right dr and the right routine and meds a normal life is possible so keep up the faith..thanks ladies Debi
for all of you....having the hips pain while trying to sleep...which causes you to get up of bed...when was the last time you changed your (mattress) of your bed?? i guess the springs are pushing on your hips while trying to sleep.one time after another.
How can so many of us have the same symptoms and some so-called educated people cannot recognize that fibro is a real disease? For my hips: (1) arnica gel is non-prescription and a pain reliever, only feeling going on is possibly cold if the room is cold; (2) Pennsaid is a prescription liquid anti-inflamtory, also cold going on **note: one of those "educated" people told me that fibro is not inflamatory and that med if for arthrititis but hey, it works** (3) massage with or w/o meds preferably by someone other than yourself who has warm hands.
Question: Anyone get knots in shoulders? How to deal? Also, my md won't give pain meds, how to cope w/ just tylenol?
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