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unbearable pain


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i have never posted before.

my doctor thinks i might have a problem with dysautonomia, although he has no idea. i have been to one hundred specialists and they have all laughed at me, and told me not to "worry about it"

my problem is this. its very hard to explain. it feels like my skin is burning, like someone has set me on fire and im burning to death. i am always so hot i cannot breath and it hurts to have anything on my skin. i cant sleep or lie down because is burns my back, i cant do anything at all. even just sitting here, with no clothes on, in the middle of winter, i am so hot all i can do is scream and scream and scream. i have to work too and its unbearable, all i do is cry and scream it hurts so much and no one can do anything. i dont actually have a temperaure and every doc i have ever been to says they have never heard of it.

i dont know what to do. i have a boyf and a best friend i love dearly but i just dont want to live anymore.

the worst of it is just about 2 years ago i finally recovered of years of **** from depression and suicide and drug addiction, i finally got my life somewhat together, fell in love, was happy...

now i have no relief. NOTHING gives me two seconds of relief. not even a freezing icy shower, or standing naked in the 0 degrees in a hail storm.

not weed...not even a high dose of heroin helps. which freaks me out

no one understands and i dont know what to do. i have tried about one million meds. i even went of my psyiciatric meds in case that was the cause. i changed my diet, did everything right, abnd nothing helps.

the weird thing is sometimes it goes away, completely for a few weeks, and i get a bit of hope, and then hits my back in the face soon after that. there is no correlation between it and stress or diet or anything. i have searched. it started about a year and a half ago, mild...my doctor kept telling me it will go away, it has just progressed, and im terrified it will get worse. i took this week off work. but i cant just stop working.

i have about half a million bottle of pills i am ready to take any time soon. i dont want to die, but living in this **** any longer is just not going to happen.

thanks for listening

APC

2012@nodeception.com

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I apologize because I need to make this short but I just wanted to say hang in there!

First of all I know that this illness can do strange things to your nerves. I have read that recovering drug addicts (years after even) can develop different problems, such as neuropathies and skin sensation disruption/burning.

I suggest that you consult a drug counselor, so they can back up what I'm saying. I would also maybe consult Dr. Low's group at Mayo regarding this issue. I suggest that because several studies have been done at the Mayo clinic in MN regarding different kinds of nerve problems.

So find someone that can back you up in your problem and support you the way you need to be!

steph

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There was a time I felt the same way as you; but autonomic problems, though incurable, can be overcome. It doesn't seem that way now, but it's possible to mitigate the symptoms and live a relatively normal life, within certain limits.

But opiates are one of the worst classes of drugs for dysautonomics; they amplify the problem. Autonomic symptoms seem primarily to be caused by low fluid volume, which causes low blood pressure; there's not enough blood to effectively circulate, so your heart beats faster to more thoroughly circulate what's there. This is the source of the massive amounts of catecholamines (like adrenaline) found in the systems of many dysautonomics; but opiates lower blood pressure even further, provoking a greater adrenaline response and increased symptoms. For the longest time, I couldn't understand why, after taking hydrocodone, I'd get anxious and start to panic; opiates are CNS depressants, right? They are, but they indirectly cause an adrenaline response via their depressant activities.

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APC,

I had that burning problem, too. I thought I was dying. It felt like my body had gone completely haywire. I had it several times over the course of about three weeks last December, but I haven't had it since. I also got very cold during that same time period. And, like you, I didn't have a fever, either. I believe it was due to low blood volume. After I started on Florinef and a high sodium diet, most of those swings in temperature have stopped.

I suggest you go to a Doctor who specializes in disautonomia. In the mean time try drinking a lot of water (I drink a gallon a day) and add more salt to your diet. If you find that hard to do, then put salt in your drinks. You can add it to diet colas, gatorade, tomato juice, and plain water just to name a few. It has helped me tremendously. I never liked a lot of salt, so I put half a teaspoon of salt into a glass of water twice a day-morning and afternoon.

Give that a try, and please try to see a Neurologist. The DINET website has a list of doctors you could try. And, confide how you feel to your boyfriend and your other friend. They will want to help you. Just being able to talk to someone about how you are feeling makes such a difference. Of course you can always talk with us here, but you also need someone closer to you.

Good luck, and keep us posted as to how you are doing. Deb

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hi thanks. ive seen a neurologist who said he had no idea what the problem was and it was definatly not neurological, i also so a doctor specialising in dysautonomia problems who also said he had never heard of it.

i am in australia, there isnt a lot of options.

i have tried flurinef, beta blockers, everything, they all helped for 2 weeks then reversed on me.

every keeps saying it will pass, but it is just progressing and i am so terrified

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I had the same "skin burning" problem. Of course, you can't see it - omly feel it. Mine lasted for about 3 months at first. I was told by all the doctors that I was crazy. It finally got better, I still have flare-ups though. Hang in there - it will get better with time.

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APB,

It took about two weeks for the Florinef to start working for me, but when it did, it made such a difference in how I felt. BUT, I HAD to increase my water intake and my sodium. Try to drink 16 ozs of water every two hours. Put a teaspoon of salt in one of the glasses of water and see if you don't feel better tomorrow.

I had low blood volume, and every time I stood up my heart rate jumped real high and within minutes my blood pressure fell and I would pass out. I never had pooling in my legs, my fainting was mostly due to the low blood volume. The hot spells were attributed to the increase in the adrenaline that was released because of my heart working so hard. Plus I was low in potassium. So most of my problems are relieved by keeping my blood volume up, and keeping my potassium, sodium, and magnesium levels within normal range so that my heart rate doesn't go out of control.

I am not a medical professional, but I know that most POTS patients need extra water, and some need extra sodium. Ask the doctor that thinks you may have dysautonomia to give you a Heads-up Tilt Table Test. If that's not possible, then have him have you lie down on your back very still and quiet for ten minutes, then take your blood pressure. Then you should sit up and continue to keep still and quiet for ten minutes and take your blood pressure again. Then have him help you to stand up while he takes your BP for the whole ten minutes. You may need to have someone else help keep you standing. This test can tell if you have orthostatic tacycardia. You may get hot during the test. This is the adrenaline causing that. :) I had to edit this because I forgot one of the important parts of the test. The doctor should also be taking your pulse in between checking your BP. Sorry I left that out. :(

I really hope you can get some help soon. Everyone says it will pass because it does. I still get the hot spells occasionally when I am in a hot place, but they were NEVER as bad as those first ones. I really thought I was dying. Sometimes you have to be AGGRESIVE about your medical treatment because you have so much at stake. Good luck and take care, Deb

Edited by Deb
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Hello and so sad to hear how hard things are for you. First off, I know you're probably pretty fed up with medical doctors at this point, but if you're feeling like you can't take it anymore, please find medical and psychological help. This board can only provide you with support from a distance -- it sounds as though you have some very real, very immediate needs.

That burning sensation may be some type of neuropathy. I used to get that in my hands and feet. Diabetics will also tell you that they get something quite similar. Does your skin change color at all when this is happening? BTW, they gave me neurontin to treat my neuropathy, and it didn't take the pain away, but it did make it calm down a bit so I could manage to cope.

We only have one listing in Australia, and here it is:

Professor Murray Esler

Heart Centre

Alfred Hospital

Commercial Road

Prahran

Melbourne

Victoria 3181

61 3 9276 3263

Autonomic Laboratory

And this one is from the co-cure good doctor list, which specializes in chronic fatigue, fibromyalgia, etc. Might be worth a shot.

AUSTRALIA CFS & FM GOOD DOCTOR LIST

West Pymble (West Pymble is a suburb of Sydney)

Dr Marilyn Golden

116 Wallalong Crescent

West Pymble NSW 2073

Ph: 9418 4057 Fax: 9418 4059

Nina :)

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