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Nireno

Active member
Joined
Jul 9, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
00/2011
Country
CA
State
Province of the moon
Hello everyone I'm new. I was diagnosed with fibro a few years ago but have been sick for over 10 yrs I'm 37. How bad do your pain get? The second I wake up I start crying and screaming. The meds help a little but I'm terrified that the pain is getting worse and the pain meds won't cover it. It is unbearable suffering and effects my sleep and walking. I use to be so healthy but the pain is tearing me apart and the weakness makes doing anything almost impossible. I'm scared all the time of the pain coming back, my body burns and burns. I sweat even if it's cold out from it, heat just radiates off my body. I can't imagine it was going to get any worse but it has. Most days I think I need a wheelchair but there's no room. Also can barely breath at night which makes sleeping very scary. Is anyone else experiencing this burning pain? It's in my arms hands and down my back. Without meds I can't touch anything even my clothes cause pain and if the temp is just a little off the pain gets worse. The pain/nerve damage has spread to my face now my jaw clicks and crunches...it's scary. I live in Canada we don't have alot of nerve tests to show damage. It's like my body is it's own torture chamber. My anxiety is thru the roof. Has anyone gotten better on a specific treatment? Thanks for reading.
 
Nireno,
I'm so sorry to hear of your awful suffering. Have you already tried changing your food diet? I'm learning more and more about how much worse this gets with certain foods. Gluten and Casein being two big ones. Then Lactose. If you haven't explored this yet, please do. Also, are you taking Magnesium Malate and Vitamin D? I've been taking it and seems to be helping with the constant pain. I have some breaks throughout the day. There is so much data out there about Fibro that it can be confusing, but I'm learning more this way than through doctors. All the best to you. Don't give up hope xoxo
 
I am also in Canada and just diagnosed after nearly 10 yrs of a steady decline in health. I am your age w/ 2 kids/a husband and pretty much feel everything you are experiencing. The pressure is thick to do something about it because I have become completely useless to my family. Everything is a chore. My body is like a broken furnace (running nonstop) that never has an opportunity to cool and am really miserable because of it. I can't get outside and even on days when I feel up to the challenge the heat makes me retreat. I have this stupid hyperpigmentation (with bright white spots) problem w/ my face that I am sure has to be a fungus from the constant heat in my body (seeing a specialist this mos).

I have always had a very high pain tolerance, so I am sure that my experience of it is as extreme, but I am managing it differently (heat, inflammation, etc). I have used a wheelchair when necessary and often think that the answer to getting out more is a walker. I ordered a couple of canes last year, but my upper body is struggling now too, so there was no way I was going to be able to manage that without any proper medical treatment/relief for pain.

I have mostly been without treatment (Tylenol here and there, but was hyperconscious of the side effects associated w/ overuse of those too).

I cannot imagine living the rest of my days in this state. It's been complete hell. I am not in a good place at the moment. I feel the same way you do.
I don't have much else to offer in the way of support, but wanted to let you know you are not alone.

I took my first Cymbalta 20m ago. Not looking forward to the next mos. while I adjust.

Deep Breaths. x
 
Nireno, We all have burning to some degree. Mine is mainly in my legs and feet. Before Savella it was much, much worse, aching and burning so badly I was afraid of spontaneous combustion! If I can't stop the burning and aching it goes up my back and wraps around my body into the ribs. I also have chronic pain from a couple different problems ,and migraines, so am on a drug patch 24/7 but it doesn't do anything for the FM that I have ever noticed.
I'm so sorry you are in such pain. There was a guy here awhile back that said he always woke up screaming. I'm sure some of his posts are still around here. He probably had the worst case I have ever heard of.
 
I've often wondered if the pain seen in FM is associated with catabolism ... the symptoms seem to be a good match. I've read in mouse studies that catabolism can occur when insulin levels are pushed too high.

If this is the case ... then reducing insulin should help ... ie lowering your glycemic load would provide relief in pretty much a dose-response relationship. Exercise also lowers insulin levels btw ... if you can ... ie raise your heart rate.
 
I try to exercise as much as I can. On odd days when the burning is horrible I'll go on the treadmill for a few minutes. One day I went for 30 mins which seems unbelievable to me today. I also think I have a lactic acid problem. Walking across the room which is 4-5 steps will causes pretty bad lactic burning. I use to exercise like crazy for hours but can't anymore. The arm burning is different from the lactic acid burning, they both making doing anything absolute torture. I went to the chronic pain clinic, they said something about peripheral neuropathy. I'm wondering what I can do/take for that that will reduce the burning. Thanks for the responses everyone, very much appreciated. I hope everyone has some good/relief days.
 
Just out of curiosity ... have you found that you have a tendency to avoid eating? ... that you tend to feel better when you don't eat?
 
Sometimes the skin on my legs and feet burns like I just touched a hot pan. I can't bear for anything to touch my skin when it is like that. I found that ice packs helped.
I couldn't stand the touch of sheets or blankets so slept with feet uncovered. It was soothing to have a fan blowing on them.
 
Tony, I have ruled out a few food/drinks that upset my stomach. I don't drink apple or orange juice as much it tends to make me throw up. When I do restrict eating I do get some relief. I've gone 4 months off gluten but didn't experience a relief of symptoms. I really do think I need to try either a complete fast or restricting then slowly adding foods. I've had a basic allergy test but didn't show any reaction to anything...I think they tested for 8 foods. I would really like something more complete like an Alcat test. Has anyone tried this? But my doc wants me to take a test to see how my body is actually functioning and processing what I eat as far as amino acid, mineral and some molds, bacteria, detection,etc. I'm going to try it. It's very expensive. Dk engineer I understand the burning I wake up and just my arms and back are slick with sweat from the burning. It's pretty agonizing and makes sleeping so difficult. I use to cover my arms with pain creme and cover them with ice packs but didn't find it offered enough relief. When my arms are like that tehy don't even feel like my arms they feel like a giant inflamed infected things attached to my body. I can't feel touch or sensations just pain, it travels down right into the bone. Absolutely abysmal. Thanks for the responses everyone hope everyone a peaceful night.
 
If my 'hypothesis' is right on this ... which is a stretch btw ;) ... not eating wouldn't be a good idea. I should note that in my case, I only started to experience muscle and joint pain for only a few months before I got better ... so I didn't get much time to 'play' with it ... so I'd treat what I have to say here with a grain of salt.

Anyway .. my hypothesis is that your body may be in a state of catabolism for too much of the day ... your body in other words is starving and eating its own tissues ... this results in extreme pain and fatigue. Our bodies cycle in and out of catabolism all the time, but my belief is that in CFS/FM our bodies are in a catabolic state much more than normal due to high insulin levels. Insulin drives nutrients into storage and when insulin is high, we can't access stored nutrients. In this state, our cells are literally starving. Weirdly .. we can be overweight yet our cells starving in this condition due to how insulin works.

The solution is to control insulin by lowering your glycemic load to what you can handle. Carbs and, to a somewhat lesser degree, protein stimulate insulin. Personally, I have to be on a ketogenic diet. To recover from exercise (this is hard) .. I focus on protein and fat ... carbs are really risky for me! I use enough fat so that I keep weight on and I use fat for energy ... really easy to lose too much weight on this diet if you are active btw.
 
Nireno... I could have written your post... I have always felt a bit different to many fibro sufferers on here as i too wake or even in the day end up shouting out in pain.

My worst pain is the all over burning muscle pain that also feels like its in my bones and joints , I have it like you describe all over my body and also in my bladder pelvis stomach and jaw and face like you.

My jaw grates like you say and often it hurts to talk seizing up after speaking for a while....my voice goes frequently too as the muscles tire so easily.

I put up with it to have the joy of a conversation but then need ice and rest to reduce the pain.

I wish I could give you a solution...I can only pray your eases soon....and say your not alone.

Many people do come out of these very bad times. Take Care x

let us know how the Cymbalta goes IsThisFor Real.
 
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Is greater pain in the morning typical in CFS/FM? If so .. it lends itself well to my 'catabolism' hypothesis ... since morning is at the end of an overnight 'fast' and blood nutrients are at their lowest point at this time of day. Interesting!
 
Sorry was away...sick again. Yes Tony my symptoms are horrendous in the morning. I wake up and all the pain hits me the second I'm awake, like being hit by a burning truck the first second of the morning. Night time is much better I tend to stay up later because I feel better and my functioning is much better. Willow I'm sorry you are going thru this too. The symptoms are overwhelming and there is so much suffering in it. It's so hard. My doc did mention going on a carb free/sugar free diet. I should try it...starting tomorrow, I bought wine gums an hour ago they're so yummy. I'm going to miss them.
 
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