Burning sensations

[MrsMais]

Hello everyone,

I would like to know if anyone has experienced burning sensations.  I have been waking up the past couple of nights with my right hand burning and stiff.  Its not hot to the touch or red. It's just a burning pain.   I have had the burning sensations in feet and thighs also. This morning I feel so disoriented sort of confused at times.  I don't know much about Fibromyalgia except that I have it and it's painful and tiring.  I have no one to talk to about this so please anyone help.

[MrsMais]

Please Comment.

[kiddthekatt]

MrsMais;
   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.

gentle hugs
Angel


  

,

[Nana434]

I can relate with you i to feel the burning in my knees more than anything,And yes it does get tiring.

[VaBreeze]

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.

[Cindee56]

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.

[MrsMais]

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!

[jason80]

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!

[VaBreeze]

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.

[Kitty76]

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 *****!
Hugs Kathy

[MrsMais]

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.

[VaBreeze]

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.

[Phtartist]

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 (inflammation), 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.

[VaBreeze]

Here is a ^5 back to you, lol.

Thank you for your thoughtful words and support.

[MrsMais]

Ok Ladies, so far everyone has said that anti-inflammatories don't do anything for Fibro. I think I'm not going to take them or the pill I take to keep me from getting ulcers from taking the antinflammatory.  Right now I feel that you ladies have more knowledge then these doctors. What do you think of muscle relaxers, any opinions???

Today has been my very worst Fibro day ever I can barely walk without any pain. I can't even lift my arms the pain is unbareable from my collar bone down.  Those damn Lyrica pills are not working and if they are i can't imagine how much worst the pain would be, and my asthmas' acting up something awful.

When I called neuro they said they were going to be doing MRI of brain again to see if the lesions have changed and also a MRI of the spine.

So VaBreeze does a flare-up mean the start of really bad pain, lol. Well at least my fingers don't hurt to bad.

[patsy10]

I have had burning sensations all over my body.  My eyes would even burn like fire.  These sensations are called paresthesias and are a neurologic symptom.  Neuropathy can cause this.  Almost all of these sensations have resolved since antibiotic treatment for lyme disease.

[SIMMY20]

hello,s sorry to here you are in a lot of pain mrsmais, and hope you ease up soon, i am like vabreeze as in all the different meds iv,e taken, the crawly feel of spiders on your head and body feeling, it,s like your covered top to toe in them and all their feet are electrofying ,running allover {nasty little things ha ha} heat spots are daily and in differnt places, has anyone got cold spots??? i get them all the time on legs /back /rms etc, and no amount of heat warms them!!  take care all and keep warm

[patsy10]

Yes I have had the cold spots too along with burning, stinging, tingling and feelings of water running down and feelings of being splashed with water droplets.  There was no water just the sensation.

[MrsMais]

Wow, I get the feeling of water droplets falling on me too, I still try to dry them off, I can't get use to the fact that there is really no water there.

I'm so sorry we are all in pain and discomfort, but i'm so happy that i finally found people that experience the same thing i do, sort of keeps me sane, lol.

I feel like these doctors really don't know as much as they should.  

Patsy I just moved to florida 2 years ago, I lived in new york in rockland county so I might ask for a lyme disease test.

[Phtartist]

Hello, I'm back from being off the comp. for the weekend. Give my neurons a break from the electrons ha ha.

I get the feeling like water has been splashed on me.  We live in a very old house. Your going to laugh. My husband has looked at me oddly so many times because I would stand there wiping my arm, shoulder or leg and looking at the ceiling, thinking it is leaking. Of course neither is occuring. ok then.;-/

Two things happen to me that I find perplexing. The first even my PT validated when I went to one. My whole body vibrates. She could not feel it touching anywhere on my extremeties, but when she held my rib cage as I lay down she felt it.

The other is a feeling as if my blood is flowing through my body like a brook/creek flows over rocks. Not smooth how blood flows through arteries and veins, but rippled.

I played ball with my dogs 12 days ago and my arm, neck and the tendon (?) at the center back of my scull/neck is so sore and tight that I have had a headach for all these days.  Do you girls get long term headaches?

How long does it take for you to recover from big events? For example, weddings your involved in, The holidays at your home.

MrsMais - I always say, at least my toes don't hurt lol.  As far as muscle relaxers go, I can only tell you my experience.  I take Soma which is a muscle relaxer which has some pain reducer.  It helps somewhat but makes me tired.  I find it most useful at bedtime to help me sleep uninterupted by severe pain, it cuts the edge.

During the day, if I take the Zydone an hour later I take half a muscle relaxer. This helps me be able to function in my home.  I cannot emphasize enough that this is not a mixture to get behind the wheel on.  Zydone has a stimulant effect on me, so it counteracts the tiring effect of the Soma.  

There is a pain med that is very effective but I don't recommend it in high doses. It is called Ultram. Not Ultram ER or XR.  Taken as needed it is amazing. The only thing is if you are on any meds that lower your seizure threshold such as, Wellbutrin, you cannot take Ultram. It contributes to that factor.  By itself or with other meds, that is not an issue.

I hope I have helped.

[Lori707]

I'm going nuts with 24/7 heat sensations. I used to have severe muscle spasms but don't anymore. Maybe a slight one here and there but I always feel my muscles are sore all over. I get pins and needles and stinging throughout my body. I have two types of heat sensations. One when my pins and needles become awful stinging that feels like burning. Also, my skin in many parts of my body feel very warm or hot while other areas feel extremely cold. I feel like I'm sweating and clammy, but I'm not. I also feel trembling inside and get a lot of muscle twitches. The doctors have no idea why I feel skin heat....and I've been to a lot of docs.

I'm going for an emg and ssep testing next month.

[VaBreeze]

Yes, a flare-up means you are having a bad time with the symptoms.  Fibro tends to wax and wane.  One flare-up and cause this to hurt; another can cause something else.  I know that when I have one, I am typically in bed for about two days.  This is when it gets really bad or when I have overexerted myself (I hate to pace because my mind says I can do it).  

Since you lived in NY, it would be a good idea to have the Lymes test.

I have also had most of the other symptoms that you all describe, at one time or another.  Mine usually feels as if a cobweb has landed on my skin or something crawling.  I look and nothing is there.

[Phtartist]

Lori, that vibrating feeling is something I talk about all the time but you are the first person who has said it too!!!

I get all the neurological symptoms you get on your skin also. Cymbalta has helped but I have to get off it because of side effects, OH JOY!  back to the stinging and sharp pains. The burning from my forehead to my shoulders and on a real neuro day burning on my whole body. The only thing that calms that down for me (burning skin) is pure aloe. I buy mine from www.desertharvest.com  
Once I've had that sort of attack, the body stuff goes away but the frontal area of the scalp to the eyebrows continues to burn for at least a week. I feel like a vampire who when I walk into the sun, I cringe and cower back into the dark corners of safety. True story, happened this past summer.

[Lori707]

My symtoms have gotten worse since I last posted and so has the intensity. Past 3 days & nights I feel the HEAT, muscle twitiching throughout entire body and now palpitations. The vibrations also. I tried to walk and my legs would shake. My face had intense stinging and heat. I took 2mg.xanax and finally fell asleep but got up every 5-15 min. I usually always feel very warm when it's cold(I purposely keep the house at 67 degrees) but for the past few days I feel so cold! Also.,..I've been getting spasms and pins & needles in my organs. Weird..but it certainly feels that way. I feel I can light up a Christmas tree. Also, I started to get buzzing in my head. No pain or sound..just buzzing feeling. ???? What's up with that? And..I've been woken from a good sleep several times by instant painful stinging and heat but my muscles are all in a spasm. Can't move or talk and can hardly breath. So hard to take a deep breath. I moan when I can to wake my husband and he moves me. Once he starts moving me and gets me to sit up, I feel a little better and my muscles start to unlock. I went to my allergest yesterday and he told me that my bronchile tube constricts and it's dangerous. Now I'm scared to go to sleep.

I'm wondering if this could be a seizure. Anyone with ideas on a possible seizure and buzzing in the head?
Lori

[FurballsMom]

Now I know I'm on the right track for sure.  I get these strange burning sensations all over, too.  Sometimes they're really deep and painful, too.  Other times that sensation feels like it's my skin that is burning.  Still other times it's an itchy crawly feeling.  I got to where I had stopped trying to say anything about these strange feelings to any of the doctors I had before, because I was already dealing with not being taken seriously and being told that I'm just nuts.  Since I had been dealing with depression, I was seeing a shrink.  I mentioned this to him, because at the time it was happening faster and more painful than I had ever had before.  I was dealing with a worse weight issue than now.  He really scared me when he tried to tell me that it was a sign of diabetes.  Except what I was reading about this parasthesis and neuropathy and diabetes definitely didn't fit the bill.  With diabetes it tends to just be in the extremities.  This doesn't just happen in the extremities with me either.  I have had this kind of pain cause me to double over with it being so bad.  I have had this kind of pain hit me right in the breast, too.  The last time my fasting blood sugar was tested, it was right within range, and I had lost a significant amount of weight.  So, I knew this parasthesis and neuropathy couldn't be from diabetes, like the shrink thought.  Still, he was the only one who knew what this pain was called, so that I could do some research on it.

[patsy10]

The neuropathy from diabetes takes years to develop as well.  It doesn't happen over night.  I have all those paresthias too from burning to cold, to feelings of water dripping etc...Mine is probably related to lyme disease.

[FurballsMom]

Yes, I know what you mean about neuropathy in diabetes taking years to develop as well.  I read that information.  I do need to be vigilant, since so many in my extended family have type 2 diabetes.  Most of them, though, aren't doing what they're supposed to do by any stretch of the imagination.  I could still stand to lose another 20-30 lbs, but that's such an improvement from where I was before.

My PCP said that I'm no longer borderline diabetic, because my fasting blood sugar came down below 100 and I lost a lot of weight.  My overall cholesterol improved, especially the triglycerides coming down to normal.  My only concern left with that has to do with reversing the LDL and the HDL cholesterols, which I'm using fish oil and red yeast rice to do that.  My PCP told me about this before my naturopath did, because I certainly don't need any pharmaceuticals for this.  It turns out that from information I've read about with CFS/FMS that omega 3's are important supplements for these conditions, too.  Of course, I've read information that all people should consider the fish oil omega 3's, including healthy people, just to stay healthy.

From what the naturopath said, she was thinking of two possibilities for me:  Epstein Barr Virus (EBV) or Lyme.  I was told there isn't really a test for dormant EBV.  No tests have been done to rule out Lyme, yet.  I know someone who has a really serious case of Lyme that he isn't going to ever be able to get well from.  I normally see his wife, but I don't see him too often, because he has such a hard time.  From what I understand, though, Lyme disease does have many of the same symptoms as CFS/FMS.  I learned about some of the symptoms from him.    

For me, the suspicion of EBV does make sense, because only a year and a half ago I had a really awful virus syndrome that lasted an entire month with every symptom under the sun, which changed from day to day.  It started out as a mild case of Shingles.  Well, they are in the same virus family, so that's not really such a stretch.  But, I was told that there isn't any way to find out for sure.

[patsy10]

Sounds like you have done a great job at lowering you blood sugar and triglycerides!  I've been taking fish oil for years now.

[Phtartist]

I don't understand how a doctor can say there is no test for dormant EBV!!!!!!
I am so angry right now I could spit!!
If you "have had EBV" and have built the antibodies it will show up on a blood test!
I have one every year or when I have a FM/ME flare-up to see what the numbers are saying my immune system is saying.

A blood test showing Igg and Agg can show if you have had EBV, if you have the complete antibodies, if it is a past active virus or if it is a present active virus.

Yes, it is in the herpes family, but it is the Mother of these viruses.  The other herpes simplex viruses do stay dormant in our spinal fluid unless we get stressed or run down, henceforth, fever sores or genital herpes flare-ups.

With EBV we can be symptomatic but unlike fever sores or genitals herpes, it is not contagious, as my Dr. has me to understand.

SIDE NOTE ---- That being said, I still wonder if EBV being a virus in the herpes family, does it inhabit the spinal fluid and that is how our Substance P , NGF  is affected?

[barb27]

Wow I can't believe that after days of checking why my shins get rushes of heat.Doctors look at me like I'm nuts I've been with this fibro since 1997 offically after 5 years of its in your mind.Well I'm sorry for anyone who has this but I'm glad I'm not alone.Even when I explanned it as a hot flash in my legs.The looks I got Then I even told them it was like a dog peed on my leg.I just got put on Lyrica and I hope it works. Mostly a nap works best.It seems like my syptoms (symptoms) are getting worse.So I have to rethink things i want to do and is the next few days of exhaustion worth it.Well I'm glad your all out there to listen to me and I am for you Barb

[deedee332]

I having a burning on the top side of my body and then an aching deep down when I am having a bad flare which I just had one for 6 days last week.  The burning/aching is throughout my whole body when this happens.

[GracieMurphy]

I've finally been diagnosed with FMS. After years of drs telling me it is in my head and I need a psych pill. Praise God I have found people that have the same issues that I have. I wanna tell all those previous drs "I told you so!!!!" Thank you each and every one for taking the time to post.