Burning skin pain undiagnosed
 

Hi all

I don’t even know where to start so this might be a long read. My name is Eugene and I’m from South Africa. I’m 30 years young .

About two years ago I had a operation where (pardon the details) I had rectal polyps removed. Everything went fine. It was just inflammatory polyps and nothing to worry about. The surgeon wanted a colonoscopy as a follow up just to make sure there were no other polyps located in the colon. (Colonoscopy was clear).

A few days after the colonoscopy everything went haywire. I had pains in my hands and feet, shocklike sensations throughout my body, burning skins sensations and abdominal pain. Went to my GP and he diagnosed anxiety. Was put on citalopram and alprazolam but it did not help much. So my drama began in 2006. When my symptoms continued, my GP sent me to a specialist physician. He did quite a lot of bloodwork. Everything came back negative. So he said major depression with anxiety. During the whole of 2006 I went to different specialists (neurologist too). Everyone could not find anything wrong and just brushed it off as anxiety.

End of 2006 I started getting terrible stomach pains and a terrible burning sensation over my whole body. The stomach pain started after numerous courses of antibiotics for pelvic pain. (which eventually was diagnosed by a urologist as chronic pelvic pain syndrome. This is gone now…thank goodness). The burning skin also started. It went away after about one month but the stomach pain persisted. So start of 2007 I was referred to a Gastro doc and he did a colonoscopy and gastroscopy. He found chronic gastritis due to H. Pylori infection. Could not finish the antibiotic course as my skin started burning due to the medication. Other than than all was clear. 2007 went by with stomach pain which was now diagnosed as IBS. Burning skin was gone too.

August 2007 I went to my Psychiatrist and asked him if my IBS could be due to my high stress levels. He said definitely and prescriped Paxil to take. Then all hell broke loose. Two days on Paxil and my skin all over my body burned so much that I had to stop the medication. This time the burning skin did not go away. It got so bad that I was hospitalized for a week due to it. Was told it was due to anxiety and was put on Effexor. Effexor made the burning worse. Tried moclobemide. Made the burning worse. My psychiatrist now feels that I have developed a hypersensitivity to antidepressants. I still have burning mostly on my hands and shoulders and face. Sometimes on my feet too. My psychiatrist took me off all medication and my skin felt a bit better. But some days the burning gets so bad that the ONLY thing that helps is 1mg of clonazepam. I have been given Lyrica 150mg to try, but I started it this week. Feels like my skin burning is getting worse. I have been to a neurologist about a month ago. He just said it could be small fibre neuropathy, but seemed to side more with the anxiety diagnoses. He said to try Cymbalta and see him in 6 months if no improvement. I had a CT and MRI of the brain and spine which came back normal.

So basically I have the following definite diagnoses:
- Slight liver enzyme elevations due to fatty liver disease (GI doc says to loose weight. I’m about 20 pounds overweight)

- Been diagnosed with insulin resistance about two weeks ago after a glucose tolerance test. Internist prescribed Metformin 500mg daily. He said I needed to see a nutritionist and get excersise.

- Chronic gastritis due to H. Pylori infection which cannot be eradicated as I’m extremetly hypersensitive to the antibiotics.

I still have skin the burning sensation. I KNOW this is some kind of neurological thing as I saw a dermatologist and he said there was nothing wrong with my skin itself. So what do I do now. My normal GP also starts to think this is neurological.
Could it be due to the fact that I’m pre-diabetic? Could this all just be anxiety. I’m so tired of doctors I don’t feel like going anymore. I just don’t know what to do anymore….and I feel very desperate. Please if anyone could shed some light on this it would be much appreciated.

My current medication is: Lyrica 75mg twice daily (doesn’t seem to help), Clonazepam 0.5 as needed if burning gets very bad. It works great.
If the Lyrica isn’t helping my GP said we could try Neurontin.

Sigh….I just don’t know anymore.

Hello Eugene...
 

Did they use nitrous oxide on you for either or both procedures? Nitrous oxide has severe effects on B12 levels in the body.

Did you have a B12 level drawn?
The drugs used for stomach issues can prevent B12 from being absorbed from food. (proton pump inhibitors)

There is another treatment for H.pylori. This involves Bismuth, like that occurs in Pepto Bismol.
Typically it is used in addition to other treatments, but I have seen some reports that it is more effective.

Also different antibiotics are used:
There is resistance appearing with typical treatments. Your statements about treatment could show intolerance to some of the drugs. Metronidazole if it were used for you or Cipro can cause neuropathies in some people, Hence the burning.

This paper gives examples of different mixes of drugs for alternative attempts to treat resistant H. pylori:
I think for now you should treat the burning as if you had B12 deficiency.
This is simple, and not harmful. We use methyl B12 here because it is available orally and not expensive. It is the activated version the body can use more quickly and efficiently. I don't know what you have there in S. Africa.
You should start with 5mg orally daily for at least 3 months. If you improve you can cut back to 1mg daily.
http://www.iherb.com/ProductDetails.aspx?c=1&pid=117

I think you need further medical care. Something is not right here.
I personally don't like it when doctors label people "anxious" when there is a clear history of no symptoms before a procedure. There may be a reason you started with burning after having the polyps removed. It seems clearly connected to me, somehow. I also do not know your culture, as to how to
suggest you get better care. But I think you need a more thorough doctor, one who can see the whole picture, not just parts of it.

Hi Eugene,

The rapidity which these doctors pronounce anxiety and depression as the cause to everything that they cannot explain, verges on 'evil'! Are you normally an anxious person?

What tests have they done so far? Have they done a two or three hour GTT (Glucose Tolerance Test)? Have you had an extensive work-up of tests?

This is a good article for the types of things that need to be investigated. http://www.aafp.org/afp/980215ap/poncelet.html

As your symptoms started to happen just a few days after the colonoscopy, I would wonder what drugs you may have had for the sedation or anaesthesia for that procedure. You sound like you may be quite sensitive to medications therefore a toxic cause of the symptoms you are having could be reasonable to exclude.

I'm sure others will give you lots of good ideas.

tests done
 

Thank u all so much for your replies! :) Glad to know someone is listening. You have no idea (then again I think many of you do) how many tears I have cried over this.

I cannot rememer all my tests, but the ones I do remember I will list:

Basic blood work - normal
Auto-immune panel - negative
Liver panel - elevated liver enzymes (probably due to fatty liver)
2 hours glucose tolerance test - indicate insulin resistance
thyroid - normal BUT thyroid uptake scan show hypothyroidism
B12 - 209 - normal according to the doctors
Hepatitis - negative
HIV - negative
Brucelloses - negative
Epstein barr virus - previous infection noted but not active
Cytomegella virus - previous infection noted but not active
CT scan of brain - normal
MRI of brain - normal
MRI of spine - show some disk problems, but according to neuro everyone gets this with ageing
Nerve conduction study of hands and feet - normal
CT scan of abdomen and pelvis - normal
porphyria - negative
colonoscopy x 2 - normal
gastroscopy - chronic gastritis due to H Pylori infection

this is all I can remember for now. I know no tests was done for small fibre neuropathy. I've decided to stop my Lyrica as its making the burning worse.

The B12 is NOT normal. The old criteria for B12 is very out dated.

You need to start supplementing NOW ...with a product like I gave you above.
In Japan they treat anything under 500.

Low B12 leads to many neuro symptoms.

Please go here and read up...rose is a member here and has been advocating and helping people for years whose doctors are ignoring them.

http://roseannster.googlepages.com/home

If you scan our vitamin forum there are many B12 pages as well.

I would echo the above--
 

-with a few other comments.

You may well be insulin resistant, but pre-diabetes/diabetes, while a common cause of small-fiber neuropathy--which, by the way, standard nerve conduction studies/EMG's will NOT detect (those can only see gross damage to larger myelinated nerves, not the smaller ones that subsume the sensations of pain and temperature)--usually doesn't present this acutely.

There's a higher likelihood of this being related to B12 deficiency. Given what you've written about the H-pylori findings, and the drugs you've taken, many of which will deplete B12 (which I suspect, for whatever reason, you're not storing well, and with that bacterial infection, probably not breaking out of food well), it would be very important to get homocysteine and methylomaic acid (MMA) tests; these are not perfect, but are far more accurate measures of your actual B12 metabolism than the serum B12 level (and yes, that 209 level is way too low).

The other thing that springs to mind is celiac/gluten sensitivity. This can cause neuropathy all by itself, or lead to it secondarily through malabsoption of B12, iron, magnesium. I notice you've not mentioned serum iron/ferritin levels having been tests--which should be done even if you are not showing signs of anemia (especially given that B12 level)--nor have you mentioned serum anti-gliadin IgG, IgA, total IgA and anti-transglutaminase IgA levels (that's a beginning in checking for gluten problems).

I'm not a doctor, but like many others here, have some experience with medical puzzles--and you haven't more than scratched the surface of possible testing yet. What I've aforementioned, based on the tests you've written about, seems a logical next step.

(Note: I also placed this post in your other thread--don't know which one you're likely to go to first.)

This is definitely not anxiety or depression. I have the exact same symptoms as some of yours and my doctor diagnosed it as idiopathic (meaning no certain cause) which means for no specific reason. But I was diagnosed 17 yrs ago with ms and the burning you speak of was horrible. I am also insulin resistant, have epilepsy and other problems, and have the sevbere stomach pains you speak of, I was told was stomach seizures. Neurontin did not work nor any of the other drugs that were prescribed. The antidepressant Elavil worked like a charm but I had to be taken off because of side effects. Right now I go to the doc's every 3 weeks for 1000mc of B-12 and it's done wonders for the skin burning. I've also had to be put on morphine because of the pain from the ms. I was hospitalized for hepatitis and got so many needles that it destroyed the piriformis muscle which is now keeping me mostly in a wheelchair. So, your pain is real and until you find the right doc you won't get any help. This is definitely a neuro problem, according to my neuro.

Hello. I have per. neuropathy, and the neurotin helps me greatly. Due to my fibromyalgia, the dr decided to switch me to Lyrica, which did not help at all. I say give neurotin a try. Although it is in the same class as Lyrica, they produced different results. Good luck!

Hello Eugene,

I understand how you feel; my symptoms were labelled as being "all in the mind" for decades before the real physical causes were discovered. You are welcome to read the pages About Me and Doctors-Apathy on my web site (URL at end of this message).

I agree with the comments, by mrsd and glenntaj, about the possibility of vitamin B12 deficiency.

Your B12 result, of 209 pmol/L (was this pmol/L, or ng/L?) does not exclude the possibility of vitamin B12 deficiency. According to experts, a B12 level of less than 295 pmol/L, in the presence of symptoms, should be investigated further. I suggest that you download a copy of the following article for your doctor:

Vitamin B12 Deficiency, Oh and Brown, Am Fam Physician 2003;67:979-86,993-4.

Figure 3 shows the recommended diagnostic flow chart.

This is reference BG1 on my web site; you can find links to many other articles on B12 deficiency on my References page.

I also suggest that you read the following article about the relationship between B12 deficiency and gastritis caused by Helicobacter pylori, my reference BR5:

Review article: is there a link between micronutrient malnutrition and Helicobacter pylori infection?, J. Salgueiro et al, Alimentary Pharmacology & Therapeutics, Volume 20 Issue 10 Page 1029-1034, November 2004

The best available tests for B12 deficiency are methylmalonic acid and total homocysteine. It is essential that, for diagnosis of B12 deficiency, you do not take any form of B12 supplements or injections before having these tests. I have explained the reasons for this in detail, on my web site, and have copied the warning to the end of this message.

I suggest that you read all of the pages in my section Information and Advice for Patients, as well as the two references mentioned above.

Please let us know if you have any further questions. If you prefer a private discussion, you are welcome to send me an Email from the Contact page of my web site.

Paul
If anyone wishes to discuss my advice about testing first, then I suggest starting a new thread, perhaps called "why test first?", rather than using this one.

Please get your records so you don't have to try and remember what
was done. They belong to you the Dr.s you have gone to will keep
copies,well really your getting the copies . Think back on everything
or anyone who has treated you and if you can get it do it. I agree
about the b12,but!!!
I just had to get all my records they were there some from 30 years ago.
I had to do this for other reasons then PN..Amazing the different in how
doctors changed there feeling about b12 why because some of this
new super duper meds. why a lot more money for a lot of people.
But look at the side effects of these new meds.Lymphoma..I agree with
Mrsd and Glenn and Paul. So many of us in up in Wheelchairs,
Please check around if you can for a Neurologist. that works with MS,
and PN.
Go on the Gluten and c. forum ask how you can try to do this diet.
I actually had a Dr. tell me when I asked how did this happen to me,
this was a good hopital,he said it's eaiser to say anisirty and Depression
then find out what is really wrong,you mean do your job,yes I like
doing mine and it took you a long time to find me,most people won't
search,and they shouldn't have to. Don't give up your worst it,also
many family members will agree with the Drs. instead of the family
patient,the family member tired of hearing I hurt I hurt so bad.

I know you touched my heart and many others. I will be leaving
for a while but will but watching and saying hi..These are good people
please let them help you and just to have them to talk to will help.
Hugs to all an read the stichies or someone will have a fit and she's right.
Sue

Very interested by your issues
 

Hi I am a 41 year old women who is expressing similar burning skin. My face also flushes still times and feels tight and burnt. It is almost like a have a sunburn all over my body. It is driving me crazy. I am so distressed.

I also had a colon scan last August and had been seeing a butt specialist because I had blood in my stools. After about 10 days after the scan, which by the way was clear, I started to get a burning sensation all over my body. It continued for months and the blood work showed nothing and my B12 levels were normal at 647. I use to take complex bvitamins but stopped because I thought the niacin might be causing my problems.

The sensations disappeared a little around Christmas but then I got strep throat and a yeast infection and about a month after the yeast infection I started back with really bad burning. I am going crazy and not sure how to deal with it. The doctor I have been seeing says it is an allergy, but I have been tested and no results. I am very scared as no one is taking me serious and I have not had the same tests as you have had. I went to a naturopath and he suggested something inflammed about my pancreas or liver. So now I am really worried. I have two small children and a husband that just recently got diagnosed with restrictive cardio myopathy. I don't believe my issues are stress related as I try very hard to exercise and eat healthy with the exception of my love for chocolate. If you have any suggestions or just want to chat back please do. It is nice to hear stories from others as burning pain is very hard to deal with. I also have burning eyes and once in a while I get a rash on my stomach, after a major work out and my clothes stay close to my skin.

Hope to hear from you soon!

Sharing your symptoms
 

Hi

I share your symptoms and have extreme sympathy. Hope the following is useful to you, I have found that changes to my diet can suppress the symptoms. It is pretty boring but if you eat white fish, brown rice, parsley sauce, and lots of yoghurt, soda water and milk, you should get an immediate result. Occasionally i get naughty and roam the menu at my local italian restaurant and the results are horrible, but if i stick to the above it really does help. There is probably more out there that one can have, as i have to admit the above is horribly limited, but maybe give it a try for a few days and see if it helps. Would be very interested to hear from others with any nutritional advice. And here is hoping this gives you a result.

Best wishes

I am NOT as smart or experienced,like the others here,but I switched from neurontin,to lyrica,then switched back as lyrica did nothing for me.But I do think you should for sure try the elavil,it helps to calm some of my nerve pain,for over 13 years now.Also,why do nerve conduction study tests seem like no one gets them,like I always did?

I also have skin burning all over my body, when I take meds. I just had
surgery and the Dr. gave me antibotics and that makes the skin burn more. If i take my prescription Zanex it stops usually. I was wondering if cleansing the body would help? But you said B12 helps? I'm misserable.

Thanks

I question that the most emphasis is given to the need for B12 without what I see as an equal need for glucose control. This patient has a pre-diabetic condition which today is seen as a serious cause of diabetic neuropathy. (And considered the cause of my very painful almost overall body sensory PN). However I also had had IBS at an earlier time than PN and had a lower reading in the low 300's for B12 when that testing was done.

No emphasis on B12 was done for me but after reading on PN boards about it, I have taken B12 on a regular basis, and kept control of my glucose in partnership with my Dr. My neuropathy continued to spread but then stopped and with me staying active, it has not advanced to numbness, it is still painful which means I can still "feel", the nerves are still alive. My B12 level is much higher.

I hope this poster comes back to read here or is thinking about the insulin resistance part of his symptoms! And if at all possible, I see a need for a skin-punch biopsy, the test for small fiber neuropathy, so there's no more guessing as to his skin condition for the burning. And I do have to say that anxiety can add to the level of the burning that may be caused by other things. The way his burning goes up and down and comes and goes puzzles me....mine is not like that. But some diabetics are more sensitive to the amount of sugars and starches they eat, I am not, they feel increases in burning if they eat more of these....

Oh my, nothing makes one burn more than an 'azepam' drug wearing off.....

You very well may have small fiber neuropathy, but benzodiazepines if regularly used will produce the withdrawal from 'heck'.

Meee toooo
 

Tell me if you've found out anything new. I have EXACTLY your problem. Alongw ithno stomach acid, I'm on full stomach acid replacement therapy with my meals and high vitamins for malabsorption. My arms burn often, I was theorizing it was niacin deficiency but I don't know. I try vitamin after vitamin in higher doses to see if it stops for any length of time. The whole certain pills make it expand to my whole body happens too. Someone said we can be sensitive to the binder in the pills or something.???(still not sure), no cannot take any kind of antidepressants/anti-anxieties or it gets really bad! I'm looking furher into Vit D doses and taking them very high, and also allergies to food now.