Discussions By Condition: Nerve conditions

Total Body Burning

Posted In: Nerve conditions 14 Replies
  • Posted By: Anonymous
  • May 31, 2007
  • 03:33 PM

I am a 46 year old female that has had total body burning (from scalp to toes and everywhere in between) for 3 months. Have high blood pressure, high cholesterol and acid reflux. Been to Neuro-he says neuropathy but cannot say why. MRI normal, Blood work normal. The burning is constant, unrelenting. Some days are milder than others but most days are ***l. Neuro put me on gabapentin 900mg per day and clonazepam 1mg at night or I would never sleep. I really need help in figuring out what might cause this. Does anyone else have same condition? The scalp burning is the worst-like lava being poured on your head. No rashes, slight joint pain, alternating diarrhea an constipation. Help!

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14 Replies:

  • Sounds like Reflex Sympathetic Dystrophy. I would definitely get this checked out. A pain specialist can diagnose this.
    Anonymous 42789 Replies Flag this Response
  • This totally sounds like RSD. Search it on the internet. I really hope that it's not. I have TOS and RSD. I was on Neurontin (gabapentin) for 2 years - 600mg x 3 daily. Your dosage is actually quite low.RSD is not a fun disease and really has no "cure". The burning that you are experiencing sounds just like it. Do you have this full body? Meaning - do you have specific areas that you have this? For instance, I have it on my left arm and is now moving to my right. I got this from my rib resection surgery for my TOS. You can get this from just twisting your ankle. Make an appt with a pain specialist. They can help and give you some medications/treatments that could help. But, do this soon. The earlier you are diagnosed, the better chance you have with putting the symptoms in remission - restarting your sympathetic nervous system. Really important.
    Anonymous 42789 Replies Flag this Response
  • Thanks for the suggestion, but not sure if it would be RSD. In July Dr changed meds to gabapentin 600mg 3 times a day and 1200mg at night. Sounds like a lot to me. Felt drugged at first but quickly got used to it. This amount of gabapentin helps but not enough. Dr changed his diagnosis-doesn't think it is neuropathy(numbness in various parts of body come and go). He's calling it parathesis and doesn't have a clue to cause. He wants me to see a rheumatologist(cant't figure out why). The total burn continues(six months and counting). I did have gallbladder surgery in July of 06 and wisdom teeth removal in Oct. 06. He removed a molar at the same time. Have a lump on gum(feels kind of like bone sticking up) where the molar was removed. Could any of these surgeries cause RSD? Joints in fingers hurt badly now. Still have grip but hurts to pick things up. I'm just so confused as to reasons for this condition and will take any advise into consideration.
    Anonymous 42789 Replies Flag this Response
  • csew,I am the same person who just posted.Typically a rheumatologist will not know what you have along with your blood work being normal. I have totally normal rheum tests.In my opinion, you really need to see a pain specialist. They have the knowledge and training to diagnose this. I know because I saw many, many doctors - all who said they didn't know.Search the internet for RSD. You can get RSD by just a sprained ankle or for no reason at all. The pain/stiffness in your hands - I'm not surprised. Just try to keep using your extremities. Once you don't use them and utilize a sling or imobilization, it starts atrophy - and then you're really limited to what you can do. Keep using your hands/arms/shoulders as you can. Walking is important.I understand that you're confused as to why this is happening. I was the same way when I heard RSD and researched it a little. Unfortunately, there is no solid research as to why people get RSD.Good luck with this. I hope you find out what's going on soon.
    Anonymous 42789 Replies
    • August 10, 2007
    • 03:22 PM
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  • What makes me think this is not RSD is the fact that it is "total" body burning. Everywhere. Scalp, face, arms, body, legs, feet-total body. There are places that are worse than others. For example my scalp. If it is burning then you can be assured that everything else is also. I used to think I was going to have a stroke when this occured because it is so intense. There are times when my hands are worse-causing stiffness and pain and then there is the unrelenting burning in my feet (soles included). As I said-everywhere burns-all the time. Just different places are worse at different times (I don't know if that makes sense). As for a pain specialist-is that the same as going to a pain clinc? Do I need a referral from my GP? He thinks I should wait for more symptoms to appear for a clear diagnosis. Yet my neuro thinks I should see a rheumy since he could not come up with anything with all the blood work and my EMG and nerve conduction study were normal. I did do some reading on RSD but it doesn't sound like that is it-but then what do I know. I'm just a confused sufferer and losing hope fast.
    Anonymous 42789 Replies
    • August 13, 2007
    • 06:42 PM
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  • csew, I too have total body burning like you describe. I am a 42-year-old female, and my symptoms came on after discontinuing an SSRI about a year ago. My neuro diagnosed me with small fiber neuropathy, though another neuro felt instead I was suffering from paresthesias that are a side effect of SSRIs. The burning got better for a while then bad again. Like you, I also get some joint pain and muscle stiffness, especially in my hands, but I have been told I don't have RSD. I've had every test imaginable, including lumbar puncture, NCVs, EMGs, MRIs, endless bloodwork, etc. Are you on any medications? I've found that many medications make my burning worse (even Neurontin!), so I am off everything for now. I'm also trying to stay away from Aspartame and MSG. I basically feel like my entire nervous system is out of whack--I have more anxiety than before, and my IBS is worse--and I'm doing everything I can to get it back to where it was, if that's even possible. I've just enrolled in a pain clinic and will see if that has any effect.
    Anonymous 42789 Replies
    • August 21, 2007
    • 04:53 PM
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  • keb,I have never been on any type of antidepressant. Just high blood pressure meds, cholesterol meds and acid reflux meds. Since July I have been on gabapentin (generic for neurontin) at 3000 mgs a day. I once thought I might have small fiber neuropathy but my neuro said I had no nerve damage, therefore he diagnosed me with parathesis. I don't quite understand this-if I have parathesis wouldn't this automatically equal some type of nerve damage? In September I have an appointment with a Rheumatologist. Don't know what good this will do. The gabapentin I'm taking does some good. Ive tried to go off of it before and when I do I'm in lots more pain. It at least cuts the pain about 15 to 20 percent. I would be very interested in keeping up with your medical situation. Hope you post any news you get. I'll be praying it is all good.csew
    Anonymous 42789 Replies
    • August 21, 2007
    • 05:39 PM
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  • I am a 42 year old male diagnosed 8 fold with RSD (8 Pain Specialists Diagnosed it).My condition is beyond bad, I got RSD in 1990 before they knew what it was, subsequently I was given improper treatment.By the time they knew what the proper treatment was, they told me "You should have come to me while I could help you"An SCS Implant, high doses of Gabapentin, Lots of Pain Meds, and now.. staying bedridden has not helped.My Narc doses consist of Oxycontin 80, Dilaudid 8, and Oxycontin 30, the latter two are for breakthrough.I look like a beet red Frankenstien, I have now gone blind in one eye (50%) and the other eye is starting.I've been MRI'd, Scanned, Poked, Prodded, Blood taken, everything and everyone has tried it all, I am losing this battle.Truth be told, if I wasn't scared to Die I would already have killed myself about 9 years ago, this damned disease has been torturing me for 14 years, it started after a surgery and spread.So at this point I am trying for disability, of course the Feds told me I was not eligable because my BP was normal (literally, that was their reasoning).Now it's in appeal and I will eventually win it, it's too bad the system has to ruin your life first before they pay you what you're owed.For anyone who questions RSD, it's more painful than Labor (per Mcgill university), it goes on 24 hours a day, and it ruins your life. You can try all the cervical blocks, experimental drugs, and "specialists" you want, for me, all they did was steal my money, I am very thankful to have a doctor who is NOT GREEDY and caring, it took me 14 years to find him but he exists.I'll remain anonymous for now, nobody here can learn much from me and I don't want to bring you down, however if you suspect RSD do not wait, had I known what it was I would have been more agressive, also, NEVER put your job before your health, I did just that and look at me now.Signed - Really *****d Off
    Anonymous 42789 Replies
    • January 15, 2008
    • 10:51 PM
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  • I have something similar, csew. From about May 2007 I started getting a burning sensation on the surface of my legs at night. For the past three weeks (Jan 08) this burning has spread to my whole body - wherever my skin is in contact with anything I get a burning sensation on the skin. There are no visible signs of this. I seem to sweat very little and my temperature is normal - I can only get comfortable by trying to regulate the room temperature. This is difficult in January at night and if I get any sleep, I wake up freezing.I am awaiting an appointment to see if I’ve got a compressed nerve in my neck - the possible cause of tendonitis in my forearms/wrists from Sept 06. My doctor says the blood test I got covered ‘everything’ - including diabetes. I feel that it is to do with my nervous system, or peripheral nervous system. I waited five months just for a nerve conduction test (negative) on my arms and I’m concerned that I might do further damage to a nerve as I wait for my appointment. My doctor (who I have asked twice) has not been able to help.Reading these posts, nobody has come up with anything. I am going to start looking at what I eat and drink - which might at least help me minimise it. If I stumble on anything, I'll post it.
    issimo 5 Replies
    • January 25, 2008
    • 02:19 PM
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  • Hi there,After a c-section a few months ago, I ended up with high blood pressure (which I never had an issue with) and this burning sensation on my left side. I'm still convinced this is due to the epidural, but I can't prove it.After several MRA's with contrast (not MRIs as they don't really look at the arteries/veins) I was diagnosed by my neurologist as having FMD - fibromuscular dysplasia. It's on the "rare diseases" list - but it's only b/c most people don't know to look for it, and it only shows up if you have a reason for an MRA.Here is a website - fmdsa.org.The signs (after high blood pressure and headache are better) are narrowed arteries and a "beading" look. You might want to look into this.
    Anonymous 42789 Replies
    • February 1, 2008
    • 01:53 PM
    • 0
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  • I have had this same burning feeling for about 6 months now! A brief history,,I'm a 30 year old bi-racial female,,I was scolded severly by hot boiling water 29 years ago when I was only 18 months old! I've always had shaky legs pretty much all my life! When I was about 20 years old I got upset about something and started to feel me head tremble uncontrolably for about 20 minutes until I calmed down! Now up to date: On October 19.2007 I was getting ready to go out for a night on the town and noticed that my left pinky finger was numb and really cold! I thought that it would go away,but instead I woke up with really cold feet and my face was sore! the sore ness in my face was my biggest concern,,,a few days later I felt as though my legs and feet were so cold that they felt as though they were burning,,my body was trembling all on the inside! I didn't have a fever nor was my blood pressure high! I went to the E.R. on Oct.30 and they said that it was an upper respitory infection!(NOT TRUE),I was given anti to take for 6 days,,did that and the symptoms got worse! I tried to go on with my daily life as if it wasn't there! Then in Nov.07,,just as I turned 30 i just thought that maybe I was going through something because of getting older,,just dealt with the burning/tingling/trembling seansation! Then in Dec,07 I was out Christmas shopping and while in the store my left arm got really cold and felt as though it was numb, I felt like I was going to pass out,,I was so cold that I felt like I was burning! I left the syore and went back to the E.R. and they did blood/urine/X-rays and EKG's but everything came up great! They pretty much told me that it was Anxiety and sent me home! In returning home my hole body was burning and I wasn't ready to accept that this may be anxiety! In Jan.2008 I noticed that the burning/trembling sensation was starting to travel throughout my entire body! I went to my PcP and he ran every test that I can think of:I was tested for Lupus,MS,HIV,Kidney,Heart,Lungs,Chest bllod and urine everything came back good! He bottom line told me that he doesn't know what this is but will be sure to keep looking,,he scheduled me for a follow up in a month and if the problem get worse call him or go to the E.R.! On Feb 2,2008 the problem got worse,I hadn't had any sleep for about a week because at night my body wouldn't rest! My legs would burn and tremble and my whole body would feel like it's vibrating,,my face started to feel like something was crawling or pulling,,I thought I was having a stroke! I went back to the E.R. Told the dr. my symptoms and he pretty much told me that he doesn't know what this could be and that I should consider a shrink!! I flipped,,I couldn't believe what I was hearing!! If the shrink can stop this burning sensation that I am feeling then I'll go but if they can't help me with that ,,I don't think so!! There's nothing mental about what I am feeling other than I'm sure since all of this has started I'm starting to have anxiety,,it's stressful to clearly know that something is going on with your body and go to the Dr. for them to only tell you that it's in your head! That night while leaving the E.R. one of the other Dr.'s that had been in the room while I was being examed(he was just observing,,maybe an intern) He stopped me on the way out the door while I was leaving with my 2 kids crying and he asked me if I had ever been tested for Heavy Metal Poisoning! My eyebrow went up,,when he said that my symptoms are signs of many illnesses but they all have been ruled out already! So I may want to get Heavy Metal Test Done! So I did,,and I'm now waiting on the results of that! I hope that's it so I can start to get treated and get past all of this! So maybe you should get the same test done,,don't know if it would help in your case or mine but I know how you are feeling,,and only hope for the best for you! If you learn anything or know anyone that can help with this please feel free to contact me at tlmatl4u2@aol.com,,I'm new to these forums and don't know how to check up on them! God Bless to all that are going through this terrible thing,,good to know that it's not just me! I'm starting to think that this maybe something new that is going on with us,,cause there isn't many dr.'s out there that really know for sure!!!!
    Anonymous 42789 Replies Flag this Response
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  • I am a 46 year old female that has had total body burning (from scalp to toes and everywhere in between) for 3 months. Have high blood pressure, high cholesterol and acid reflux. Been to Neuro-he says neuropathy but cannot say why. MRI normal, Blood work normal. The burning is constant, unrelenting. Some days are milder than others but most days are ***l. Neuro put me on gabapentin 900mg per day and clonazepam 1mg at night or I would never sleep. I really need help in figuring out what might cause this. Does anyone else have same condition? The scalp burning is the worst-like lava being poured on your head. No rashes, slight joint pain, alternating diarrhea an constipation. Help!I don't want to add concern to anybody, but this sounds a lot like carcinoid cancer, or syndrom..Please check it out if you still have these symptoms..
    Anonymous 42789 Replies Flag this Response
  • I am a 46 year old female that has had total body burning (from scalp to toes and everywhere in between) for 3 months. Have high blood pressure, high cholesterol and acid reflux. Been to Neuro-he says neuropathy but cannot say why. MRI normal, Blood work normal. The burning is constant, unrelenting. Some days are milder than others but most days are ***l. Neuro put me on gabapentin 900mg per day and clonazepam 1mg at night or I would never sleep. I really need help in figuring out what might cause this. Does anyone else have same condition? The scalp burning is the worst-like lava being poured on your head. No rashes, slight joint pain, alternating diarrhea an constipation. Help!I have the same symptons for the last 4 months all blaood test come back normal. Going for a mri in 2 weeks. Im on 3oo mg. 3x a day and it seems to take the edge off. It gets so bad at times I have to use ice packs. I just want a answer to what it is. Im tired of Dr.s saying its stress or menopause. I know my body and there is something wronmg.
    Anonymous 42789 Replies Flag this Response
  • I am 58 and have had similar problems for 12 years. Burning started in the hands, and has moved to the face, feets, legs, arms. I have been trying to go to a specialist, however, my insurance company - United Healthcare doesn't seem to see the need. I took it upon myself to go to Iowa City only for the doctor not to even look at me (and I was flared at the time) and told me he didn't know why I was there. This was after my personal physician called him to set up the appointment and discussed my symptoms with him. Needless to say I am also *****d off!I am a 46 year old female that has had total body burning (from scalp to toes and everywhere in between) for 3 months. Have high blood pressure, high cholesterol and acid reflux. Been to Neuro-he says neuropathy but cannot say why. MRI normal, Blood work normal. The burning is constant, unrelenting. Some days are milder than others but most days are ***l. Neuro put me on gabapentin 900mg per day and clonazepam 1mg at night or I would never sleep. I really need help in figuring out what might cause this. Does anyone else have same condition? The scalp burning is the worst-like lava being poured on your head. No rashes, slight joint pain, alternating diarrhea an constipation. Help!
    Anonymous 42789 Replies Flag this Response
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