Any suggestions to relieve the burning sensations?

[Sueb24]

Hi everyone. Every time I wake up the sensation of my feet burning starts to escalate to a very painful level. I also notice my body starts to shake at the same time. Does this happen to anyone else? It’s almost as if becoming ‘conscious’ awakens everything & it rises to a peak. Are there any supplements or medications that help with this aspect of fibro?

 

[Mary Alice Long]

I totally empathize with you - especially the phrase, "as if becoming conscious "awakens" everything and it rises to a peak!!"
Although I have the occasional burning, tingling, numb sensation in my feet and hands, my main symptoms upon awakening
every morning are severe nausea and shaking, (and my hands are numb.) I was diagnosed over 35 years ago with fibro, and although
I've had months, even years of remission, it is definitely getting worse as I get older. I'm so sorry to hear about your symptoms - I
know how debilitating they are. I've recently gone to an independent lab for some bloodwork I wanted done, but insurance would not pay for it. (Of course, I'm paying for it out-of-pocket, but it will be worth it to get some answers). I had a micronutrient panel done; results
should be in soon.) Good luck to you - you're in my prayers.

 

[sunkacola]

Hi everyone. Every time I wake up the sensation of my feet burning starts to escalate to a very painful level. I also notice my body starts to shake at the same time. Does this happen to anyone else? It’s almost as if becoming ‘conscious’ awakens everything & it rises to a peak. Are there any supplements or medications that help with this aspect of fibro?

Have you asked your doctor about this? If so, what did they say?

 

[Sueb24]

She just said it was neuropathy

 

[Sueb24]

Thank you Mary. It will be interesting to know what the tests reveal. I was diagnosed in 2006 after 8 years of ME between 1992 & 2000.

When he diagnosed the fibromyalgia I remember the consultant saying that ME & fibromyalgia were at opposite ends of a continumn and that they merged somewhere towards the middle with a lot of overlap. Now that both conditions are being considered as autoimmune diseases I am hopeful that treatment will eventually be as good as they now have for conditions such as Rheumatoid Arthritis (which I also have).

I too have had long periods of remission from the fibro when I’ve almost felt ‘normal’. I wonder if it’s that as we get older everything takes longer to recover from generally? My consultant also told me that with the RA I had a very high pain threshold as others would have been screaming in pain when I was ‘coping’. This fibro episode has almost had me screaming

 

[Sueb24]

Thank you Mary. It will be interesting to know what the tests reveal. I was diagnosed in 2006 after 8 years of ME between 1992 & 2000.

When he diagnosed the fibromyalgia I remember the consultant saying that ME & fibromyalgia were at opposite ends of a continuumn and that they merged somewhere towards the middle with a lot of overlap. Now that both conditions are being considered as autoimmune diseases I am hopeful that treatment will eventually be as good as they now have for conditions such as Rheumatoid Arthritis (which I also have).

I too have had long periods of remission from the fibro when I’ve almost felt ‘normal’. I wonder if it’s that as we get older everything takes longer to recover from generally? My consultant also told me that with the RA I had a very high pain threshold as others would have been screaming in pain when I was ‘coping’. This fibro episode has almost had me screaming in pain with the burning sensations. It’s interesting to note you also have the ‘shaking on waking’ experience. I hate this bl**dy illness.

 

[Sueb24]

Oops

 

[Auriel]

Hi Sue b (just curious) do you get the burning pain in a specific area/area's (mine are worse in my leg's, last weekend was very bad, felt like they were filled with fire ants, very horrible) I find altering my diet a bit + trying eliminating stress as much as possible and good sleep helps me (though it has no actual flavour, I've found green tea helps the wierd sensation, I go for decaffeinated cos caffeine bothers me) I just had a little look on the internet search, how to treat peripheral neuropathy naturally (it's quite interesting) I take gabapentin (cos mine is really bad on time's

 

[SBee]

Very odd @Sueb24 that we have some extra similarities. I had (what I have only had officially confirmed by by gp ) chronic fatigue syndrome for 4 1/2 years much the same years as you were diagnosed with ME! Obviously have fibromyalgia and now seronegative inflammatory arthritis as well. How strange.
Have only seem rheumatologist once and he just muttered well as won't be doing anything about The fibromyalgia or osteoarthritis. Charming. Was too shocked and confused about everything to query it.

Can I ask you if you have managed to work out which of your symptoms come from what condition? I ask because I have just started on methotrexate for the arthritis ( will take weeks to kick in I know ) and despite speaking with an rheumy nurse, I don't know what pain I may be left with Once the meds either stuff? It's like they just abandon any help towards the fibro, and my own gp so far says it's all up to the rheumatologist!

I kind of think I need to be treated, or at least considered as a ' whole ' in that all 3 conditions all have a crossover in symptoms and therefore in what is atm, a pretty rubbish effect on day to day life.

 

[Sueb24]

Hi Auriel, I have burning especially along the bottom of my feet, elbows and hands. My feet were numb a couple of weeks ago but less so now. I drink decaf everything, gave up fizzy drinks like coke & Diet Coke, haven’t had alcohol for a number of months and try not to get stressed as I know it makes things worse.

I’m taking magnesium threonate, Co-enzyme Q, turmeric and NAC for the fibro as well as a multivitamin, and fish oils. Whether any are helping at all I really don’t know except I do think the NAC helps energy levels. I refuse to take Pregabalin ( again) as I put on so much weight with it previously. I only take prescribed duloxetine for the fibro and other things for the RA.

What ‘weird sensation’ does the green tea help with?

 

[Auriel]

They're good things you're taking , oh the weird sensation I was referring to, the crawling moving feeling I get in my leg's. They tried me on pregabalin years ago, (I had to stop taking it, it was giving me auditory hallucinations)

 

[Moose]

Hi Sue- I have severe burning throughout my body often. Mostly on right side. I was put on gabapentin and it has reduced much of the burning. I went off the meds once the pain alleviated and soon discovered I needed it everyday. I personally try to keep meds out of me until I’m sure it’s worth risking the side effects.

 

[Moose]

Hi Sue- I have severe burning throughout my body often. Mostly on right side. I was put on gabapentin and it has reduced much of the burning. I went off the meds once the pain alleviated and soon discovered I needed it everyday. I personally try to keep meds out of me until I’m sure it’s worth risking the side effects.

 

[Sueb24]

Hi again SueB. Yes, I can clearly differentiate between the RA symptoms & the fibro symptoms. I was against taking methotrexate for many years for RA but my CRP levels became so high I risked severe damage to my joints so had to give in. Then it stopped working so I underwent tests to see if I qualified for biologics. Thankfully I did.

Methotrexate helped the inflamed joints and early morning stiffness for me. I also take sulphasalazine for RA.

I agree about the ‘whole body’ approach. Unfortunately they just don’t seem to know what to do about the fibro apart from giving us antidepressants. I live in the SW of England near a ‘centre of excellence’ for Rheumatolgy and was told many years ago it would be largely up to me to ‘manage’ the fibro. They are brilliant with the RA.

 

[Sueb24]

Interesting the burning only resolves with medication Moose. I was hoping turmeric might have helped with it. It may have slightly reduced it but nothing very significant thus far.