Burning Muscles and Skin

[Carrigon]

My friend calls this lactic acid burn, I don't know. All I know is, everything has this weird burning feel tonight. I'm in so much pain. It's not a fire burn feeling, it's more like an ice burn feeling. As if someone left me out in the snow and ice all night. But I'm not cold. I'm just burning.

I had severe brain fog today. And severe fatigue. And my light and sound sensitivity is really bad lately. I can't take anything, the slightest noise, the sun light. It all hurts.

I've also had IBS flares all month and everything I eat makes me sick. Everything. I'm constantly nauseated lately. Doesn't matter what I eat or drink, even water.

I'm really down from this whole thing. And the holidays are not helping me. I just want to die or cry all the time. In too much pain, have no life from the disease. Anyone who ever cared about me is dead. And I'm left here to rot on my own with this disease. And I really don't know what to do anymore.

I feel like I have no real medical care. No treatments that really help or work. And no one cares. And all the people I used to know and be friends with or date, they're not sick and have all gone on with their lives. Everyone has a life but me. I'm in some kind of hell, and no one will tell me what I did that was so horrible that I deserve this.

So, that's how I've been feeling lately. I'm so flared up tonight and in so much pain. I wish I could get a pain med that would work on this, but nothing does. There's just nothing.

 

[alex3619]

Hi Carrigon, I am sorry to read that things are especially hard for you right now. I have a lot of the same issues, and for me life would have no meaning except for one thing: we create meaning, it is something people do, something I do. Advocacy is what gives my life meaning for now, though at other times it has been other things. It might help if you can find something that is important to you and pursue it, even if its only pursuing it a litle bit every now and again.

On the muscle and skin pain, I have posted before that it is likely that many of us have burning skin syndrome, and that its connected to small fibre neuropathy. Are you in a position to have this investigated? I can't get the test myself, as it is not done in Australia.

Bye, Alex

 

[*GG*]

Are you sensitive to meds? Have you tried/heard of low dose naltrexone (LDN). I know it doesn't work for everyone, but many have had good success.

How are your Vitamin D levels? My impression is that you are not out alot, so your levels are probably low. You should look into boosting the levels, it's rather hard to get toxic from Vitamin D.

gg

PS I have been on both for over 2 years now, along with lifestyle changes etc..and am doing the best I ever have.

 

[Valentijn]

I don't know if what I get at times is the same thing, but it sounds like it could be. Doubling my hydroxyB12 on those days as needed (going up to 80mg sublingual spread throughout the day) helps get me through them.

 

[justy]

Sorry to hear this Carrigon, no advice im afraid, just sending some hugs your way (in case you need them)
((((((( ))))))

 

[Carrigon]

@Alex It's getting so hard to find anything I really care much about anymore. Too many years of this, lost too much, and between not feeling good and feeling burnt out, and constantly stepped on, I just don't know how much longer I can do this. Any time I've tried fighting for advocacy, I get kicked for it. There's always someone there to rip me down and be in denial and ignorance that cannot be broken. They simply want to be evil. And I'm so tired of fighting evil.

I've been taking lots of vitamins and minerals lately, but I just realized that the one thing I did change in the past month has been my multi vitamin. So I just switched that this morning. We'll see if that helps at all. But I'm in alot of pain today. Something really has me flared up, and I don't know what it is.

 

[pamb]

Hello dear Carrigon,

Sending you huge ((((hugs)))) and gentle, soothing waves of peace over those darn burning feelings. My husband is really struggling with the burning these days and finds lyrica helps or neurontin - although they have downsides too. Mostly I wanted to let you know you are loved.

Pam and John

 

[Carrigon]

Thanks, and thanks to all those who responded. I don't know why we go through down periods with this disease. I've had years where it wasn't as bad, and then I've had years where it's been really bad. And this seems to be a really bad year for me.

 

[Sallysblooms]

If it is neuropathy, the correct dose of alpha Lipoic Acid and Benfotiamine can heal the nerves. Quite amazing.

 

[hurtingallthetimet]

sorry to hear your having such a hard time the burning feelign seems like it comes along with these illness...i know espically my neck will burn and hurt so badly...my hubby will feel my skin and he says it is ice cold but to me my skin is deep burning all over, does tthat make any sense? ive lsot so many people due to being ill...friends that really werent friends...its sad that just because someone becomes ill some pepole will dump them to the side to die....

i just wanted you to konw your not alone so many have posted feeling the same and i understand how you feel...i cry every single day....i have no friends really left...ive lost being able to work...ive lost so much over being ill and im tired of it..im crying as i write this because im having a very bad day...i want to be alive again...im tired of the constant pain and fatigue...i just want to go to sleep sometimes and not wake up for years and years...

the holdidays are very stressful for alot for alot of reasons...for me its having it thrown even more in my face that i have no friends who stuck by me and who cared....no holdiay parties...no job..and its just stressful for alot the weather changes, the shopping the money issues everythign....stressful for the ones who feel they have to entertain family and friends and the amount of energy it takes...

i hope that you are feeling much better by knowing that you have peopel on the boards that understand

 

[Carrigon]

hurtingallthetimet Same situation here. Everyone left me for dead. One of my cousins told me that sick people are depressing downers and she won't have anything more to do with me. My other relatives all tell me to get off my lazy butt and get a job. It's just unreal how we get treated. My friends are long gone, everyone is gone. I'm poor from the disease, my health is gone. I'm in the same boat. There is no life from this disease. And I often say the same things you do. I wish I could sleep for a thousand years or more and then see what things are like.

I don't think it's neuropathy. I think it's part of the gout. I've been getting gout flareups and I seem to get the burning along with it. Either way, I'm in a lot of pain and stiffness. And my doctor keeps wanting me on gout meds and I keep saying no because of the horrible side effects. They scare me. I'd rather give up meat forever first.

 

[Calathea]

Carrigon - I'm sorry to hear you're going through this, it sounds rotten. I've had years of no pain meds that do anything as well. I did recently discover that valium combined with co-codamol works beautifully for migraine and muscle pain, although I only use it when those are bad as the side-effects are a bugger and they're too addictive for regular use. Have you gone through the various combinations as well as the individual drugs?

Alex - could you explain more about burning skin syndrome? I sometimes get the sensation that my skin is burning lightly where it's touching the bed. I'm due to have the district nurse come out and see if a mattress topper will help, but I have no idea if that's the right approach. I've been on gabapentin/neurontin for a few months, although never at a stable dose as we've been taking it up and down.

 

[Carrigon]

Pain meds don't seem to work on me anymore, or I'm intolerant to them. I had bad reactions to narcs. And other stuff, like the butalbital just isn't touching the pain. I find I seem to build up very fast tolerances to drugs and then they no longer work at all.

 

[Blasted]

Carrigon, I see this is an old post but you're the closest someone has come to describing what my flare ups are like minus the IBS stuff.

That cold burn that you talk about, I get the same thing, I've heard it referred to as cold fire. When I'm flared up that accompanies the other symptoms you mentioned. Light sensitivity, brain fog as well as memory problems, altered mood, soreness and general malaise.

I've found that bed rest of a few days is the only thing that will cause the flare to abate. Lyrica helps a bit to dampen the nerve signals and I'll take half a Percocet when things get really bad. Although masking the pain too much can be a mixed blessing since it makes it tempting to be more active which detracts from the rest we need.

I don't even know if this is SEID or not, but I do agree that it is a hellish thing to go through and to find people who understand.

 

[Blasted]

If you have symmetrical burning pain that flares up after being active I would highly suggest you get your doctor to do a VBG (venous blood gas) test when you're feeling bad like that. This will confirm if your blood pH is low and/or if your CO2 levels are elevated. It could be that you have a respiratory insufficiency that is causing you to retain CO2 which translates into increased acidity in the blood and tissues after exertion. There's a reason it feels like lactic acid and that's because it is! I hope this late addition to this thread can help someone else because until I recently started on inhalers to treat my respiratory issues I was lost in undiagnosed limbo and disabled. Goodluck!