Fire and Ice nightmare

Scrambles

Member
Joined
Feb 13, 2020
Messages
15
Reason
DX FIBRO
Diagnosis
06/2019
Country
US
State
MA
My Neuro told me this was due to a small nerve fiber issue, but the sensation is fairly horrific. Does anyone else ever experience the sensation (I get it mostly in my legs and feet,) of being both dipped in a vat of boiling oil and of freezing to death? I know it makes no sense, and my Drs. have looked at me like I was deranged, but I don’t know how else to describe it. It’s unbelievably painful, and has literally made me howl with tears, this from a person who has dealt with severe chronic pain issues prior to this for 25 years. I can no longer tell if my feet are hot or cold, without touching them and even then I’m not sure, due to the same issues in my hands. This is a bit scary, as I have absentmindedly picked up a cup boiling hot water and not felt it and blistered.
 

Flowers

New member
Joined
Feb 15, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
12/2011
Country
AU
That sounds horrific, you poor thing! The closest i have felt to that is a feeling like someone has a fan heater about 6 inches from my lower back and is just holding it there. It would come in waves and i found it very frightening as there was no way to get away from it. I can imagine that feeling of hot and cold at the same time though - sometimes when my toes get too cold they can feel a bit like that, frozen but burning at the same time. A neurologist of all doctors should be able to understand that sensation.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
i have neuropathic burning deep throbbing pain that's sometimes what i call icy burning pain. I have had it non stop in my whole body especially waist down almost 24/7 including my girls parts these last 4 years....i could howl and wail and it has brought me to my knees mentally. My first 7 years with fibro was more normal pain ......sometimes severe aching and that was bad enough and i would always recover back to a level where i could achieve quite a lot and enjoy life.

I'm so sorry for anyone who gets this type of pain....well any pain but neuropathic pain is unbearable.
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
145
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
I agree that deep burning pain is miserable!!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
573
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Yes, I have had that kind of pain and it blots out everything else.
 

Scrambles

Member
Joined
Feb 13, 2020
Messages
15
Reason
DX FIBRO
Diagnosis
06/2019
Country
US
State
MA
I’m sad for anyone who experiences pain like this, or any nasty pain at all, but somehow it helps to know that maybe I’m not alone. Thanks for the responses. It helps. :)
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
573
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Yes, it does help. I thought I was sort of going crazy when I got three-level pain in my legs. It is that bone-deep hard aching pain on the bottom, then a feeling of intense discomfort above that, which keeps telling me that if I move my legs it will feel better, over and over, but of course moving my legs doesn't help. And then on top is that creepy crawling insects or tiny electrical shocks feeling all over the skin of my legs. It feels unreal - like, how can all this actually be happening at once? But to learn that others experience those things really helps because I knew I was not imagining it or going nuts. :)
 

Scrambles

Member
Joined
Feb 13, 2020
Messages
15
Reason
DX FIBRO
Diagnosis
06/2019
Country
US
State
MA
And no one likes to think they are nuts! Doesn’t that just drive you crazy?! :p :LOL:
 

Meepm33p

Member
Joined
Sep 25, 2019
Messages
10
Reason
DX FIBRO
Diagnosis
09/2018
Country
US
State
New jersey
I THOUGHT I WAS GOING CRAZY!! Dude my hands, holy cannoli my hands one minute will be cold and the next feel like they are boiling, it’s insane! Sorry it’s happening in your legs I can’t imagine that
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
573
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I think the thing I find the most irritating about having Fibro is that the pain is so utterly unpredictable and irrational. For instance, I did my hike yesterday, which involves a pretty strenuous uphill workout, then down again, and normally the next day my knees are feeling it. But instead, last night my hand was absolutely killing me. Just one hand. But the pain is incredible. Still there this morning. Now, yesterday I didn't do anything with that hand! I didn't even twist off a jar lid. It makes no sense for it to be the thing hurting me so much today. I'm glad it's not my knees, because that might mean they are getting stronger.....but what is up with this thing with the hand?! (of course this question is rhetorical. No one knows why this happens. that's the frustrating thing.)
 
Joined
Feb 20, 2020
Messages
25
Reason
DX FIBRO
Diagnosis
05/2003
Country
US
My Neuro told me this was due to a small nerve fiber issue, but the sensation is fairly horrific. Does anyone else ever experience the sensation (I get it mostly in my legs and feet,) of being both dipped in a vat of boiling oil and of freezing to death? I know it makes no sense, and my Drs. have looked at me like I was deranged, but I don’t know how else to describe it. It’s unbelievably painful, and has literally made me howl with tears, this from a person who has dealt with severe chronic pain issues prior to this for 25 years. I can no longer tell if my feet are hot or cold, without touching them and even then I’m not sure, due to the same issues in my hands. This is a bit scary, as I have absentmindedly picked up a cup boiling hot water and not felt it and blistered.
 
Joined
Feb 20, 2020
Messages
25
Reason
DX FIBRO
Diagnosis
05/2003
Country
US
My Neuro told me this was due to a small nerve fiber issue, but the sensation is fairly horrific. Does anyone else ever experience the sensation (I get it mostly in my legs and feet,) of being both dipped in a vat of boiling oil and of freezing to death? I know it makes no sense, and my Drs. have looked at me like I was deranged, but I don’t know how else to describe it. It’s unbelievably painful, and has literally made me howl with tears, this from a person who has dealt with severe chronic pain issues prior to this for 25 years. I can no longer tell if my feet are hot or cold, without touching them and even then I’m not sure, due to the same issues in my hands. This is a bit scary, as I have absentmindedly picked up a cup boiling hot water and not felt it and blistered.
I brought this down for two reasons: what you are describing is two different pains and I have had them both. The first part of this is called zings or electrical pains. I also get them in fingers and feet also in the groin. Once I tried a new pill and laid down I had this horrible headache with the electrical pain or zing in my head. It was horrible like it would split in two pieces. Needless to say I never took that pill again and no one should have to. The second part of this is numbness, where it is easy to cut yourself without knowing as well as getting burnt, etc. anything could happen. You are in so-o much pain that you go numb, in a way it is a relief but then something bad could happen to you. It is so difficult and I am asking you to please to be careful for example I won't even cook when I am numb. Get something cold from the refrigerator or have someone else make the tea. We need to help each other. Take care.😚
 

minilandrover

Member
Joined
Mar 3, 2014
Messages
25
Reason
DX FIBRO
Diagnosis
05/2009
Country
fr
State
maine et loire
Sorry to hear about your condition. One thing i have learnt about fibro is its ability to exaggerate levels of pain.
I don't mean you are exaggerating the pain you feel, no its fibro exaggerating what should be slight pain or even just feeling hot or cold.
Eg my fibro would make a small rsi feel like I'd really done some seriouse damage to myself, or worse, when i dropped a heavy steel plate against my leg and ripped open the skin i didn't feel any pain. In fact i only discovered how bad id hurt myself, was at bedtime when I removed my jeans to discover the deep gash, blood and scab that had formed.
Id been on pain killers for years, and was not helping myself trying to reduce pain by taking high levels of tramadol.
Also to avoid getting addicted to tramadol i stopped taking it outright.
Several things have changed by doing so.
First, i have slowly reduced some of the side affects of tramadol.
Second, i have taught myself to accept the constant background pain. And ignor it.
Third, my pain threshold has improved.
It wasn't easy but i feel better for it.
Another thing over the years, is the re occuring high pain attacks that suddenly appear, and take longer and longer to subside have now a lower level of background pain. Whereas befor, taking strong pain killers just punctuates the high and low levels of pain. Not doing anything to stop new attacks.
Fibromyalgia also effects how we percieve pain.
It exaggerates the slightest pain and quickly wears you down as well as causing hands locking up and going numb, its capable of making a divide causing one half of my hand totally numb, and the other side painfull. I believe this is happening because there are two different nerve paths to the hand, and only one is being blocked by fibro stopping any sensation of feeling, and stopping the ability to move fingers, whereas the other nerve path is un affected or exaggerated.
Also fibro creates sensations and pain where there is no physical reason for feeling any pain.
I feel the use of really strong pain killers is just playing along to what fibro it doing to us, and makes the highs and lows more severe.
This is of course just part of how fibro affects us, but is one of the most common symptoms we suffer with.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
573
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
minilandrover, I agree with what you are saying above. I also stopped taking an opiate pain medicine and am much better for it. The bit about not feeling pain on one occasion, while feeling outrageous pain for no apparent reason on another occasion I also fully understand. At times even if I just ever so slightly bump against something, the pain is excruciating. Other times I will find a bruise and not know how I got it. Taking strong medicine for pain is not the best way to handle this. I believe that having a positive attitude and staying as active as possible and eating a healthy diet are all far more helpful than opiates.
 

Scrambles

Member
Joined
Feb 13, 2020
Messages
15
Reason
DX FIBRO
Diagnosis
06/2019
Country
US
State
MA
I understand what you are saying about the exaggeration of sensations (or lack thereof) and the mysterious bruises, and I agree that a positive attitude is key to living with this illness.

I was also on heavy opiate use for 15 years which probably masked the onset of the symptoms of fibromyalgia. When I finally tapered off the opiates two years ago, this fibromyalgia was a very nasty surprise. Up until that point I had just been dealing with some numbness in my fingers and toes. The pain of the small nerve fiber damage had been hidden by the opiates.

So, I would have to say l actually did better on opiates, than off them. If it wasn’t for the hysteria, I’d probably still be on them. Oh well.
 
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