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Feels like Icy-hot
seminolearnp posted:
Good moring everyone. Its been awhile since I've posted. My question is is anyone familiar with a burning sensation like "icy-hot" with intense skin sensitivity? Seems even the slightest thing is intolerable. Wrinkled sheets, pajamas, clothes, pretty much anything is super uncomfortable. Could it be a side effect of neurontin? Seems like that would make it better. Thanks, and I hope everyone has a terrific day!!
coralmala responded:
Dear Seminolearnp: You are describing the way my thigh and arm muscles feel with fibromyalgia. For a time Neurontin was prescribed for me but it didn't work. Have tried many other medications, but nothing works for more than a few months at a time. It is discouraging. I wish you well and hope your doctor can help you diagnose the cause. Will watch for your updates.
tazqzy responded:
It sounds similar to what I have on my right side from the collar bone to the elbow. Stinging burning sensation, excessive sweating on affected area, skin changes, problem with anything touching it (literaly cut hair so it would not touch shoulder), numbness and tingling. I have R.S.D. Reflex sympathetic dystrophy or cronic regional pain syndrome. I have had it for the last 3 years. I am on a number of medicatons of which neurontin is one. Your right neurontin should help this kind of pain but always check the side effects you never know. If this is RSD then getting diagnosed is important. They say if you can diagnose within the first 6 months the chances for helping someone is much higher than if you wait. Unfortunatley it took almost 2 years before anyone would confirm what I had since it seems to be a process of elimination. I went to about 12 different doctors, including City of Hope to see a musculoskeletal speicalist and the Mayo Clinic (which just confirmed what my doctors told me). I really hope it is not this but the symptoms are real close to what I have. Also RSD starts from a minor incident, mine was brought on when I fractured my collar bone. From what I understand RSD is brought on by a minor injury so if you have not had this in the affected area it probably isn't RSD but still sounds like some kind of nerve damage.

I hope you figure it out. I wish you the best of luck.
ncbeck responded:
Carol, this is my first time to post, but your entry caught my attention. Since I was 19 I have intermittently had what I call "nerve" pain which resembles siatica but includes what you have described. It feels like my skin has been burned. There is never any visual sign on the skin and it never progresses to any visual sign like shingles would. I typically get it on my leg and inner thigh area but have also had it on my arms and rib cage area. It is similar to the feeling I get on my face when I end up getting a fever blister, so maybe it is linked somehow to the shingles or herpes virus, but it was never in conjunction with that before.

I have tried for 20 years to get an answer but get dazed looks from the medical professionals I have asked. So, please keep me posted if you come up with any solid answers!
sensitivetouch responded:
A full-body sunburn all day, every day is how I describe it when people ask how I feel!! I was dx w/ MS in 2006. After about an year of Baclofen, I was put on Lyrica for foot and leg pain. Now, the burning has spread to basically all over. I "think" it is a side effect of the drugs. Of course, they won't admit that!!

Because of muscle spasms in my legs caused by MS, I have to take Baclofen. Because of pain, I have to take Lyrica! One or both are affecting my balance, so I mostly "wall-walk" through my days hoping for my body to make an adjustment I can live with.

I recently tried a supplement of B-2 & B-12 for 2 months that was supposed to help.with fibro. pain. I couldn't tell any difference. A chiropractor once told me to avoid nerve-stimulating foods like caffeine, sugar and pepper. I lead a very bland life, and it makes no difference! Will be watching this discussion!
sunnymae67 responded:
I take neurontin for my MS and it has helped these symptoms except when my MS is acting up. It's impossible to figure out how to get comfortable at night because I am dealing with two extremes. No cure seems to help but you might ask about increasing you nurontin during those times. It might help since nurontin seems to help these types of symptoms.
sunnymae67 replied to sensitivetouch's response:
Lyriica is a mix of Nurontin and Tegretol (both of which I take seperately) but when I tried Lyrica all of my symtoms came back so I dump it after a couple of weeks. Seperately the two meds work much better.
50cindy30 responded:
Hi, I'm new to this site and have read with great intrest all the replies thus far. I have this same icy-hot burning, drawing pain since having laser-burning of the sensory nerves from C-2 thru C-7 9 wks ago. Saw the pain doc again almost 3 weeks ago and take tramadol and lyrica on a long term basis for fibro and a multitude of back/neck issues. He said wait a few more weeks and see if it improves, if not he said he may need to do a "block to the area. The area is on the right side of the back of my head and down the neck to about C-6. I'm a disabled RN but not well versed as to what my problem is actually called. He did this same laser therapy on the left side of my neck, and both sides of my low back including sacroiliac joints with miraculous results. Any ideas what the "block" injections are or what my problem could possibly be? Thanks, CindyRN
greg8846 replied to 50cindy30's response:
Hi Cindy RN;
Since you have been in the medical field ther could be a whole list of problems your dealing with. As far as blocks go you have a understanding of the blocks like they use in delivery's.Well besides that there are several, you can get into Pain Branch Blocks. Ther are Epidural Blocks they use for pain blocks. They try to put the injection into the most painful area's of the neck or the back. They will use s spinal needle and gain entry in into the space blindly its not done under x-ray like a Facet Block is done. The doctor will most likely use Depo-Medrol (Methylprednisolone) this will be mixed with Lidocaine sometimes with Eppy sometimes with out. The doctor is hoping that he can bathe the nerves in the area with the medication. sometimes this will work and other times it won't i think a lot depends where your pain is how long you have had it. And how long you have been made to wait for intervention. A lot of people blame the doctors for waiting but a lot of times folk will wait when the injury was bad and they have made it more severe. You know and i both know folks are sometimes scared of hospitals and doctors. The other major block that is done is the Facet Blocks. These are done under real time Fluro x-rays they want to put the injection in the Facet joint inside the inferior and supeior facets, above and below to make sure they get the block in the best place to try and get the imflammation down a little. With this type of a block you will have a IV they are going to sedate, you will be awake, but you must remain very still. Somtimes they use to use Valium, now a lot of doc's are using Versaid, it wears off quick. But you have to be face down and that in itself can be a chore to a lot of folks. Again they will use a numbing agent, something like Lidocaine or Bupivacaine. This all depends on the doctor also. Every doctor i ever worked with has there own special way of doing thngs, the biggest concern with any block is to make sure the area if free of contamination. Infection is always a valid and very important thing. When this all started were you injured on the job or waht happend if you don't mind me asking. Well another thing welcome to the board, any questions i can ever help you with please don't hesitate to ask. Also feel free to invite yourself into any and all threads, this is a pulbic board and your always welcome here.

Greg Armstrong
50cindy30 replied to greg8846's response:
Hi Greg, thanks for the warm welcome. I have had a horrible back documented on films for the last 10 yrs, but trouble with it for 25 yrs. Never hurt on the job, but thank God I paid for my short and long term disability insurance till my SSD came thru last Aug. Back problems include scoliosis in lumbar and upper thoracic areas, DDD thru-out the spine, a healed comp. T-10 seen 10 yrs ago on xray that I never knew I had, buldging discs in cervical and lumbar areas with impingement into the spinal canal. I developed Myasthenia Gravis, a neuromuscular disease (Hey, I'm one of Jerry's kids!!!) early spring 2005 but not dx. till Oct 2005 thanks to an Opthamalagist's testing and then to a neuro despite my PCP's poo-pooing. Had a Robotic Thymectomy Jan. 2006 as I was still young at 46 to slow/stop the progression of this disease. I do know they did some kind of pain block in the left chest before I was even aware of the pain waking up from that surgery. About 3 1/2 yrs ago I started having pain and numbness of the left arm that didn't get better with PT. Then I was losing function/strength...hand me a plate of food and my arm automatically dropped and I was rapidly losing ROM of the shoulder and continued pain and numbness. I demanded an MRI from my PCP and it showed the problems in my neck. Saw a spinal surgeon and I had shrunk 1 inch in a years time. I then had an ACIF(anterior cervical interbody fusion) from C-3 thru C-7 which gave me my ROM and hand capibilities again. Wore a Miami-J collar for 8 months and despite wearing an external bone growth stimulator for 3 of those months I just didn't fuse at C-6 to C-7. I then had a Posterior fusion of C-5 thru C-7 with wiring, plating, autologus bown marrow put in my neck and an internal bone growth stimulator was placed. Wore that darn collar another 5 months, did PT for 3 wks and started having the increased pain so he removed the plate from the pedicles/facets on the right C-spine. Doc wouldn't release me to return to work so I was terminated and 3 months later the long-term disab. people told me to file for perm. disab. and I did. Allsup is a wonderful company to work with if you ever need to get SSD or SSI. I also have had fibromyalgia for 20 yrs, depression for 14 yrs and the spine surgeon felt I had a nerve trapped from the ACIF affecting the left shoulder/scapula areas. The pain doc I go to uses IV Fentanyl 50 mcg for sedation and I talk straight thru the procedures and he uses the fluroscopy because I could watch the real-time movements as he was doing the lumbar and cervical radiofrequency/ablation or burning of the sensory nerves and this has given me immense relief of pain. If he can do something about this shingle type of pain in the back of the right neck and almost to the top of my head that developed the next day then I will be happy with the rest of the lot in my life. I have a wonderful, understanding hubby and 3 great children gone from the nest and I exercise 4-5 days in the pool for the last year which has helped me to regain muscle mass and is great for depression too. CindyRN
greg8846 replied to 50cindy30's response:
Hi Cindy;
I must say you have been through the wringer and like i said please post often if you would your training and education will help here a lot. At times the Pain Exchange Board is so busy.. I try to be as helpful as possible and give good advice after the patient has seen his or her doctor because have you ever ran into a doctor who has hours to explain everything to the patient, its next to impossible. By the way if you want to talk about anything of a private matter i always give my email out to folks because somethings are of a very sensitive nature and should may not be put on a post. My email is . Also when you write i will dig up some more info that i can find it on blocks that are used today. I just recieved a lot of things form New England Journal of Medicine and im not permitted to re-write them here on the board because of infringement rights. By the way that collar you were wearing is one of the best collars that are used the Miami J collar is not the best on comfort but it does a good job. When i worked in Public Public service in EMS we did a lot of work for the Jerry Lewis Telethon, you can't say anything bad for the man, he is a great and very loving man. I don't think i have ever heard of him having had any problems with the public other than years ago he and Dean Martin had a runin but before Deano death that was put away and they became very good friends again.No one has ever done as much in Public for MD than Jerry himself. As far as im concerned he is a saint in his own right. Well talk to you sooc Cindy and again a very warm welcome to you.

Greg Armstrong
susannazoo responded:
I have Fibro Myalgia as an after effect of Chemo therapy and those are the some of the symptoms I have when it flares. I'm not sure what can help apart from Brufen or a similar anti inflamatory.
hummingbirdm replied to greg8846's response:
Yes I agree they sure can after dealing with a case myself, if you even think it see your Dr ! I didn't go in right away cuz I thought it was flea bites, big mistake I've been told. I wouldn't even want my worst enemy to have this but as others have said it could be other things, or places ~ trunk,waist, face, eyes

chesney2009 responded:
Sorry for your pain.I suffered with the same symtoms for years in and around my left shoulder blade and under my arm pit.Been 16 years and I 've diagnosed with muscle spasims,lupus,had therapy,shots,muscle relaxers and still very little relief.It got so bad 6 months ago I found a new Dr. and now I have finally gotten some relief.I have 'neurapathy',which I probabaly did at work damaging some nerves.It is associated with shingles too I think.My Dr.started me on neurotin and a anti-depressant.No better.Then she started me on Lyrica.I saw some improvement but after upping the dosage to 600mg.I can actually function again.Lyrica is what helped me and even though it still bothers me at times,It's much better than it was.I hope this helps.No-body knows how painful and sore this condition is.
greg8846 replied to coralmala's response:
Hi Coralmala;
I have to agree with you about the Neurontin, i had taken it to for deep nerve pain and if never seemed to work at
all. I would still have the severe pain and the burning through out my limbs. I wish there was a better medication out there
that would help with severe nerve pain. Well thanks for your post and if your new please come as much or as little as you would like. Again you have a great weekend and i wish you the best in health that you can get.

Greg Armstrong
seminolearnp replied to greg8846's response:
To everyone that replied a HUGE thank you! I saw a new doc today. Integrative Medicine. He is checking a lot of lab work that he suggests may have been overlooked including Lymes titre. I was given more Vit D (already on 50000u per week), as well as various other supplements, diet, exercise program, etc. He says I have myofascial pain syndrome/fibro, malabsorption syndrome/Celiac, probable Hashimoto's thyroiditis/hypothyroidism along with my DJD, DDD, SICCA, OA, etc, etc, etc...I go back in 2-3 weeks for lab review and poss accupuncture. I hate to say it but I don't have a lot of hope that this will work. Guess I've been disappointed too many times. At least he didn't treat me like a drug seeker or hypochondriac!! I'll keep you all posted on how it works out. Thanks again for all your responses and support.

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