I am so sorry that you are hurting. But yes, I have that buring deep down in all parts of my body. I usually get the burning sensations before I fall into a flare with the horribly painful knots in my muscles. This is a wonderful site to find someone to chatr with. I feel blessed to have found it when I did.
Feel free to send me a message at any time, I'm off and on pretty often and I will get right back to you. When the burning starts, I g my heat pad out and place it on different areas, it seems to help some.
I can relate with you i to feel the burning in my knees more than anything,And yes it does get tiring.
I don't get the burning sensations as much as I do a feeling of hyper-sensitivity of my skin. Anything that comes in contact with it, during that time, makes it hurt. I have had times where any form of clothing hurt to wear, or as if my hair was hurting (actually it's my scalp, but it feels like my hair). I seem to get this type of sensation all over my body. Never the full length, but in different locations on different days.
Yes, it is quite painful and does leave one feeling fatigued. Has the doctor who dx'd you placed you on any type of medication to treat the symptoms? How long ago were you dx'd?
We hope you will be able to gain some information and great support here. This is a wonderful forum. We are all here seeking answers and praying for a cure.
Yes, I get burning, stabbing pains all over. My legs, back, buttocks, feet and hands, knees. It's very uncomfortable. I get it a lot at night. I don't know if it is nerve pain or what, but you're not alone.
I get the hyper-sensitive skin on neck, shoulders and back. I'm on lyrica, anti-inflammatory medication, muscle relaxers and a sleep aid. I basically have no stage 3 or 4 sleep so I'm always exhausted. I feel like the medications don't work, but i'm giving them a chance.
I was dx'd in 2 months ago (october) prior to dx I went to many doctors, first they thought it was MS, (because they found lesions in my mri) so they watched that for a year, then MS was ruled out. Went to a Rhuem. on a very hyper-sensitive skin day, he did the tender points, looked at results from sleep study, and asked many questions and he dx'd me with Fibro. So finally I know i'm not going nuts, my pain is real!
I share your symptoms with the hypersensitive skin and other pains listed above. Doctors haven't given me a firm dx. I thought that I probably did NOT have fibro because I was under impression that fibro was more muscular pain in the various trigger points, but wasn't accompanied by skin pain. Confused....
BTW, I maxed out on anti-inflammatory OTC drugs that had no effect whatsoever on the pain level, presumably because the pain is not due to inflammation. I've tried Nortriptylene and Neurontin, both with some efficacy for calming the nerves, but not nearly as much as I would like!
Fibromyalgia does involve much muscle pain and trigger points, but there are at least 50 other symptoms that are involved with this illness. Not all of them happen at the same time, but yes, it is very confusing. You can google Fibro and look at all of the symptoms involved.
Anti-inflammatories will not work because fibro doesn't cause inflammation. It is research being done and they believe it is possibly a metabolic disorder and involves the central nervous system. Neurontin does help, but it doesn't work quite as quickly or as well as Lyrica (that is my experience). I am soon going to try going back to Neurontin because Lyrica does not come in generic and is a bit costly.
MrsMais - You are not 'nuts', lol. I'm sure you knew that when facing those doctors. Did your doc. prescribe something to help you sleep? Stage 3/4 is so important. Good deep sleep is when our body restores itself. It won't make the fibro go away, but without it, my body feels 100x worse.
I sometimes get a slight burning sensation in my lower legs but I mostly get these quick sharp pinch like burning pains mostly in my lower back and butt :OP ( that's where my Fibro is the worst ) but sometimes other areas too....Fibro *****!
Hey VaBreeze, I agree Lyrica is a bit costly. I'm on anti-inflammatories, you think i shouldn't take them. To be quite honest I feel like nothing works except my sleep aid and even that just helps me fall asleep and sleep for 4 to 5 hours, not more but certainly less before i wake up from the pain!
I called my rheumotologist in reference to the burning because it is so painful and he said that he thinks it's more neuro, and to go see neuro (AGAIN!!!) so I made my appt. will be seeing a new one on 12/19.
And i knew i wasn't nuts but they sure did make me feel that way, so I got rid of all of the and got new doctors that are willing to listen and ask questions!!!
VaBreeze thanks for being here for so many of us. Good to have someone to chat with.
Sometimes the pharmacutical co. will post coupons on their site. That could help with the cost of the Lyrica. I always check periodically to see if they have listed anything.
As you can see from the other members here, the burning and sensitivity is common in fibromyalgia. Even though I am on Lyrica, I still get those sensations in various places. Most likely the neuro will tell you that you have fibrositis (fibromyalgia). Lidoderm patches may help, but they would have to be placed on the skin directly. I've found that a cream called Sombra helps with my pain. The good thing is that they have said you do not have MS.
I'm glad you have an appointment on the 19th. Also, be sure to mention your sleep issues while there because they can address that as well. If you have any arthritic pain, the anti-inflammatories will help that, but i've not found them effective in treating the fibro. When taken over a long period of time, there can be problems with ulcerations. I would only take them when you needed them for pain other than fibro. This is just my opinion from my experiences with them. I see that jason80 also tried them and commented that they did not work for him either.
The problem with FMS and CFS is that there are so many different symptoms, at different times and levels, that many physicians do not know how to treat them. That is why we are typically bounced from doctor to doctor trying to find an answer. Hopefully, your neurologist will be able to test you and rule out other possible complications that might cause what you are experiencing. From the sound of it...I believe you are having a flare-up.
We aren't nuts, lol. We are just in pain and want to feel better. You are most welcome MrsMais. It is wonderful to talk with others who understand and can relate to your illness.
Take care and please let me know what happens after your visit on the 19th. Good luck to you.
If I could high Five you I would. You are the first person on here that is speaking my language and up to date on the current medical FM consensus that makes sense. I have been following medical research on Fibromyalgia for 12 years now. I am a poster child for the illness, running a complete gamut of symptoms from my head to the balls of my feet, including the initial burning this thread began about.
I am glad to see they picked you to wear a flower :0} Yes, this is a neurological illness. One reason that I, when I have pain that Vicodin works on (there is pain with FM that V does not work on) that my Dr. and I found a Vicodin med with less Acetominophen. There isn't inflamation, so I don't need to affect my liver with acetominophen which negatively affects the liver. BTW, the med is Zydone, same pain med, less anti-inflamatory.
My most painful place that if I hit it is the inside of my elbows. It is so painful to touch but if I hit it by mistake, my arm freezes and cunvulses. Freaky huh!
Hugs to you all, gentle ones.