Erythema, Maybe Starting To Scar My Chin?

[blueskies]

Glad your skin is calming down and feeling better.

sorry the singulair didn't work out as hoped and I truly empathize with the migraine issue - glad it is over. I am happy you have a doc who is listening to you at last and caring.

Let us know how it goes.

noreen

Thanks Noreen,

I have a couple of specialists that are pretty good. It's my gp that's an idiot, in my opinion. Problem is I'm not motivated to change him as I now live just around the corner from him so should I need a script written it's easy for me to get there rather than having to travel. But he's been wrong so many times now I'm starting to think the effort that goes into travelling further to see a decent gp might just be worth it.

I realize how lucky I am to have understanding specialists. The best ones frankly admit that I'm one of the rare patients (rare because I have POTS) that seems to react to things arse end around. (Typical POTS patient). I do worry though that they are going to get sick of me -- a lot of the stuff they know about but just can't help me with and have to leave me to deal with it on my own as best I can. They don't leave me hanging though. I can contact them at any time if i have problems I can't get on top of. However, I've read over and over again on dysautonomia sites how docs will suddenly just drop their patients because they can't help them and are frustrated trying to. This, leaving their patient with nowhere to go. It does frighten me that this could happen to me too. I have trust issues, I guess.

blue

[janiedelite]

However, I've read over and over again on dysautonomia sites how docs will suddenly just drop their patients because they can't help them and are frustrated trying to. This, leaving their patient with nowhere to go. It does frighten me that this could happen to me too. I have trust issues, I guess.

Me too... The first doc who actually diagnosed me with POTS stopped returning my calls after I reacted badly to the only two meds he tried me on. Since then, I tend to try to be overly "thankful" to the three docs who have stuck by me. I don't blame you for shopping for a new GP, although I certainly understand how convenient your original GP must be. Still, you have to look out for your best interests long-term.

[blueskies]

Thankful,

I'm sorry about being so tardy in getting back to you on this issue. I did an experiment on myself om the meantime in regards to other symptoms-- stopped the low dose opiates I am on for chronic daily migraine to see if my bowel would move a bit which it did for all of two days. 6 days later I started the opiate med again and it's taken a full week to get back to feeling at the same level I did migraine wise than before I stopped the med. I had some horrors of migraines while off the opiate -- I was put on low dose opiates for the migraines to begin with. Migraine is now under control but still have bowel problem.

ANYWAY,

I think I promised you a time line concerning my erythema, my red, burning skin. My memory isn't so good -- blame brain fog but I've pretty much figured it out. I'm including the anaphylactic reaction to asprin that I first had as I think it's all mixed up together, anaphylaxis, anapylactoid reaction, hives and fluid filled welts, and finally red, burning flushing skin.

Times are approximate:

10 years ago had anaphylactic reaction to aspirin. Had never been allergic to anything before this.

Not long after this my skin became red and sort of flushed and warm after taking a week of sinequin (old generation anti-depressant). I was taking it to help me sleep.

Around this period I also experienced big fluid filled welts/hives on my abdomen when I tried two later generation anti-depressants -- one a SSRI, one a SNRI. I was being put on anti-di's because at this time 'all my symptoms' were in my head.

8 years ago I started to get hot red irritated skin again. The redness was in patches. It was then I noticed that my clothes were irritating my skin but put it down to being overdressed in warm weather -- which I now realize wasn't all that warm. I can look back and see I was underdressed for weather. I stopped taking the gabapentin (neurontin) I was on but skin problem continued. I stopped the naramig (triptan for migraine) and didn't experience any more skin problems for a little while. I think I'm talking a few weeks here. It all happened so quickly and it scared the **** out of me when it did happen that fear has made it difficult to remember. Not to mention brain fog.

Not long after that I experienced a sunburnt shoulders, face and back but couldn't work out why as I'd not been out in the sun long enough to cause the problem. I'd been for a short swim. Two days later 'sunburn' was gone and there was no skin peeling that is usually associated with sunburn. I know now it was the hot burning skin stuff.

Around this time I woke up with burning legs. Both legs, toes to thighs. were on fire. Not sure if they were red because I was in bed in dark and couldn't see very clearly and did NOT want to get up. The burning lasted about about an hour. And I was able to go back to sleep.

Not much later, I was on Day 5 of a migraine that would not end -- this was when the migraines were working towards beoming daily (it took a few more years until they were daily but pain duration had definately increased). Anyway, I was taking panadeine forte -- which is like tylenol with 30mgs codeine, xanax, and I'd taken some med I can't remember the name of that helps with nausea. After 5 days I couldn't take the pain anymore and it was night time. Instead of dragging husband out of bed like I'd been doing a number of times in the last year for increasing migraine episodes that I could not get under control and getting him to take me to emergency (the hospital could not get them under control either and I just had to wait them out) I rang a night doctor. He gave me pethedine (I think you might call that 'demerol' but am not sure). He gave me the shot and told me I'd sleep for a while but the migraine pain would probably come back. He left very quickly. I didn't fall asleep. Instead. I WOKE UP. I couldn't work out what was going on because I'd had pethedine a couple of times over the years and it had sent me to sleep/knocked me out. I even checked the empty packaging of the pethedine that he'd left behind on my bed to make sure he had given me the right drug and he had. I did not sleep for about 5 days. My skin was hot and burning and I couldn't stand wearing any clothes. i sat on my bed during this time with a very old sheet -- worn and very soft -- wrapped around me in between having cold showers. I was extremely agitated. I was freaking terrifed. But I did not ask hubby to take me to emergency as we'd spent quite a bit of time there over the past few years as my body had started do weird things (undiagnosed POTS things) and emergency had never been able to treat me and hubby agreed with everyone at the time -- that it was all in my head. It was not long after this time that other symptoms got so much worse the doctors could not deny them

During the early morning of the 6th Day I finally fell asleep only to be awoken 2 hours later by the alarm clock which I couldn't work out to turn off. (Long story but I eventually smashed it to get it to stop). I realized straight away that my whole back felt on fire . Hubby had left for work so being exhausted and not wanting to try his patience anymore I rang an ambulance. Looking back I now realize I should have done that straight after the pethedine injection.

The ambulance took me to a major hospital where i saw a truly horrible doctor who confirmed it was a drug reaction. He gave me some cortisone tablets, and some anti-histamines and sent me home. My back continued to burn and I had bouts of diarrhea. (I was still going to the toilet normally, once a day, back then and had never experienced diarrhea, let alone the complete constipation that was to start 5 years ago. The burning travelled to my face and neck, my upper arms and my feet up to my knees, and across my shoulders. This went on for a couple of months which I spent sitting in front of a fan dressed either in my old sheet or the softest clothes I could find. I was having cold showers as this would stop the burning but I'd get rebound burning later on and finally a doc told me to have coolish showers (not cold) and this helped quite a bit. And the burning was not near as intense as it had been. It seemed to be settling. My gp told me he'd seen this reaction to drugs in one of his patients and it had lasted 2 months for her and then it had gone away. I settled in for a two month wait and then deliverance for this god awful pain (which did, as I said, start to ease off a bit).

Then I needed to take an antibiotic for some reason -- forgotten what reason. I took one tablet and within an hour or two the burning was back to it's original horrible level. I dragged hubby out of bed (most of this stuff seemed to happen at night which was really inconvenient) and got him to take me over to a hospital emergency. I waited ages to see a doc. By the time I'd saw him the burning was greatly reduced. But he did have the first bit of advice that was any use to me -- go see an immunologist.

But first off my gp sent me to an allergies and food intolerances clinic at a well known hospital here in Australia. They put me on a strict elimination diet and long story short I've never been able to get off it. I reacted with hot red skin whenever I ate things off the diet. So I ended up living on high fat and sugars for a great part of my diet with minimal variety of vegetables and fruit and lots of other restrictions. that hasn't changed. I've put on a ton of weight from the high fat diet. Also, hifibre makes my chronic constipation (which started5 years ago worse and my guts hurt more).

I got a referral to an immunologist/allergist who treated me on the diet (she agreed at first with the hospital clinic's assesment) and tried me on a number of meds to help the problem. My skin was calming down unless I strayed from the diet or took a med that caused the skin reaction (not all meds do, but many do).

[Oh, about 5 years ago my bowels had stopped working -- overnight. Totally stopped. I now had a gi. I'd seen a cardiologist in this time who failed to diagnose dysautonomia and I was seeing a neurologist for my migraines who also failed to diagnose dys].

About 4 plus years ago my allergist/immunologist suggested I go see another specialist. Not expecting much, I went along to see him and after a barrage of questions and battery of tests he diagnosed me with POTS (by then, I was unable to stand for more than a minute or two on my own and had to lean on someone when I walked -- just putting this in there because it was the other symptoms that were now present that led to his diagnosis). It took about a month for the diagnosis.

About 2 years ago I had an anaphylactioid reaction to either a laxative or zylocaine cream. My allergist/immunologist couldn't work out which one it was and neither could I. I'm ususally pretty good at knowing what I've reacted to. All during this time I've built up more allergies. And 'intolerance's which come in the form of hot red burning skin. However, since the anaphylactoid reaction my skin has remained somewhat sensitised all the time -- just waiting for the next trigger (many of which I can't pin point). Meaning my skin can burn for no discernable reason but at a level I can mostly 'ignore' even when it's red. It's when I try something that often I have the reaction that takes me to that painful level where my skin is burning so bad it hurts to put on clothes. eg. while off opiates the week before last I tried another triptan migraine med and spend the night sitting up in my lounge room with just my underwear on and no heater etc. It was one of Sydney's coldest winter nights to date. Although the reaction lasted about 4 days it only lasted at that higer more painful level about 24 hours.

Oh, and just over a month ago, a reaction to epsom salts which I'd been using for 5 years to go to the toilet (with more and more erythema like reactions occuring) finally caused my skin not only to go red and burn badly on my face but also to peel, like I've mentioned. This was mentioned in my earlier posts but thought I'd better stick it in here.

Absolutely not sure what I'm going to do when my guts back up so much again that it becomes really painful as I can't go off the opiates for the little relief they give me gut wise -- just not worth it for the migraine problem. I have a call into my pots doc because I think he and some of my other specialists have to grapple with this problem (they all practice at the same hospital which is very handy -- I 'organized' it that way, that all my good docs would be at the same hospital) and they need to come up with some sort of workable answer and I think it needs to be in a hospital setting as I just can't do try any more new meds at home and they really need to see that the migraine/diet/constipation problem is NOT something that I'm managing. And if they are all together debating my case then they can't just fix one symptom and forget another. And they need to find an answer to my very highfat, unhealthy diet. My pots doc is away this week but if he's not rung me by Monday I'm going to ring and leave another message again. I'm going to become one of those outspoken patients that push and shove till they get some workable resolution to their problems. I've been too accommodating up until now. My allergist/immunologist told me I was too accomodating and that I had to stop being so complaint and really speak out for myself. It only took me a year or so to digest her advice but I now realize she's right.

It's funny how my problems with walking (i can walk a bit further most days) and standing (I can stand for a few minutes most days without feeling sick) have become the least of my worries with regards to POTS.

Anyway, Thankful, I hope this helps. I've wandered off the point a bit but ask me any questions you'd like. I'm going to try and pm this to you too.

blue

[janiedelite]

Hi Blue,

Thank you so much for spending so much time sharing your history. Wow, what a horribly long and painful journey... It was painful just to read, I can't imagine how it's been to live with such pain, a horribly limited diet, and very little options for medicating any of your symptoms. Thank you for sharing, and I'll pray that you get answers soon.

[dianne.fraser]

Blue

Re your migraines - have you seen a pain specialist? I know that Professor Michael Cousins, a Sydney-based pain specialist, has worked miracles for some migraine sufferers using an implantable device of some sort. I understand that it worked for Kieran Perkins' wife, Symantha - Kieran spoke about his family's experience at a pain summit held in Canberra earlier this year. I think it takes a long time to get in to see Professor Cousins, but I understand that, for the people who do, it can be life-changing.

With best wishes

Dianne

[blueskies]

Hi Blue,

Thank you so much for spending so much time sharing your history. Wow, what a horribly long and painful journey... It was painful just to read, I can't imagine how it's been to live with such pain, a horribly limited diet, and very little options for medicating any of your symptoms. Thank you for sharing, and I'll pray that you get answers soon.

Thanks Thankful,

I did promise you a 'time - line' but that's the best I could do.

I know reading through that last post of mine that the skin burning thing sounds terrible and long lasting. And it is. BUT, I am fully aware that I got off pretty lightly when it comes to OI as I'm doing much better in this regard than I was 4 years ago. I know some people get worse, that they can hardly get out of bed to go to the toilet and are unable to shower regularly without help etc. I can get out of bed most days and do. (Some days I'll sleep 24 hours through but that's usually after a bout of bad insomniaz). itness. 4 years ago I was totally housebound and needed someone to lean on when I went out to go to a doc's appointment. Although often unsteady on my feet I manage to get to appointments etc, by stopping and sitting and resting regularly. in that regard I'm doing so much better.

blue

[lieze]

That's fantastic.

It's very encouraging to hear the improvement many of you have experienced in time.

It gives some of the rest of us a bit of hope.