Burning and pain after activity

[bslav]

Hi

Posting on behalf of my wife who has had ME for 15 years, last 12 years severely affected. She has always been housebound with intermittent periods of being bedbound, and recently (4 months ago) had a 'crash' which has seemingly left her at a much reduced level. She was in bed all the time for the first 6-8 weeks, and now she can walk only small distances (a few yards a day) and has to spend most of the time in bed or sitting down on the settee . All her usual symptoms are now a lot worse.

She has been trying to build her strength up again by doing very small activities and increasing them over time but she hits a wall - basically if she overdoes it she gets a symptom that she has never had before: severe burning pain in her arms, up the sides of her trunk, in her chest, legs and abdomen. It can take many hours for the pain to go away once it comes on, and the severity seems to be related to the level of activity. Does anyone know what this might be? Is it lymph-related maybe? Are there any treatments for it? Desperate for help on this.

Many thanks

John

 

[nanonug]

All her usual symptoms are now a lot worse.

John, I am very sorry about your wife's condition.

Would you be kind enough to enumerate all her symptoms? This would make it easier for people here to get a better understanding of your wife's condition.

 

[bslav]

She has post-exertional malaise, chronic colds, a persistent resiratory infection that she caught last year (only controllable with undenatured whey - nothing else works), insomnia, FM pain, gut dysbiosis, chronic sinusitis, frequent bladder and nasal infections. It's the chronic viral infections overall that have led to a very low quality of life - they just don't seem to be healable - but she was previously able to do some light activities. However, after the relapse she can't even do those and she can't build herself up again in any way due to the pain caused by this new symptom.

 

[nanonug]

She has post-exertional malaise, chronic colds, a persistent resiratory infection that she caught last year (only controllable with undenatured whey - nothing else works), insomnia, FM pain, gut dysbiosis, chronic sinusitis, frequent bladder and nasal infections. It's the chronic viral infections overall that have led to a very low quality of life - they just don't seem to be healable - but she was previously able to do some light activities. However, after the relapse she can't even do those and she can't build herself up again in any way due to the pain caused by this new symptom.

Based on these symptoms, my first suggestion would be to try an antihistamine such as Diphenhydramine (Nytol in the UK, if I am not mistaken). If that helps, there are other things that can be potentially done. Good luck!

 

[bslav]

Ah - are you saying that this could be some allergic reaction? She had recently been taking promethazine with painkillers but had stopped that a while ago. Can't remember if the pain was there when she was taking this, but I guess it works in a different way to benedryl.

 

[nanonug]

Ah - are you saying that this could be some allergic reaction?

How did your wife do on promethazine? Did the painkillers help with the pain? What were the painkillers she took?

I would say probably not an allergic reaction. But histamine is known to wreak havoc with people's bodies and some of the symptoms you described can be associated with histamine. But there's nothing like experimenting and see what happens.

By the way, what happens if you stop undenatured whey?

 

[bslav]

She found promethazine mildly sedating, but not much more. Was taking it with codeine to avoid any vomiting but tried without and didn't vomit so decided to stop taking it. The codeine does help with the burning pain (but if it's too bad then it won't take it off completely).

The undenatured whey is the only thing that keeps the respiratory virus down. If she stops taking it then it comes back with a vengeance. However, when she takes it the chronic cold symptoms return (she never has both the colds and respiratory virus at the same time, so there must be some competing cytokines going on there) - but means she's never without viral symptoms

 

[nanonug]

The undenatured whey is the only thing that keeps the respiratory virus down. If she stops taking it then it comes back with a vengeance.

In terms of symptoms, what happens when your wife stops taking undenatured whey?

However, when she takes it the chronic cold symptoms return

Would you also describe the symptoms observed in this case?

I am asking these questions because I think there is a chance of something else going on besides viral infections per se. Undenatured whey is a source of cysteine, a glutathione precursor. Cysteine is a powerful mucolytic and that may be the reason it is helping in the lungs. But it may also be thinning the mucus secretions too much, causing irritation/inflammation in the nasal passages. An antihistamine should help with this one, though.

Does your wife have gastritis or acid reflux, by any chance?

 

[GcMAF Australia]

John
Maybe GcMAF, MAF 314 or https://chronicillnessrecovery.org/
may give some relief

 

[taniaaust1]

basically if she overdoes it she gets a symptom that she has never had before: severe burning pain in her arms, up the sides of her trunk, in her chest, legs and abdomen. It can take many hours for the pain to go away once it comes on, and the severity seems to be related to the level of activity. Does anyone know what this might be? Is it lymph-related maybe? Are there any treatments for it? Desperate for help on this.

That can be just another ME symptom. I never myself found anything to help that one except dont do the things which trigger it off. If she gets worst that symptom will be there FULL time. She needs to be taking more care and not doing anything to bring it on.

She has been trying to build her strength up again by doing very small activities and increasing them over time but she hits a wall

That's probably the worst thing she could be doing and will keep keeping her ill and she may even end up far worst then she is right now. With severe ME.. its just impossible to build up strength by exercising (and even very small activities can be intense activity for one with severe ME).. with exercise/activity in ME patients we dont have the normal response to activity.. instead of getting more oxygen etc to cells we end up getting less. Forget about building up strength by any form of activity if you are a severe ME patient.

I used to have severe ME (completely bedridden for 9mths and needed to be cared for.. much of that time I was even unable to walk to a loo or stand). I ended up slowly building up my strength by aggressive rest therapy... eg limiting activities to an even lower level thou I was bedbound eg never brushing hair, not dressing, washing once per week, I even needed to limit how much energy I spent to eat food etc (my case was very bad).. and over time my strength got more and more and I was able to do more and more till I left the bedbound state .. by aggressive rest therapy I even went on to even have a full remission for a few years.

She needs to start listening to her body even more and let it guide her on how much she can do..that may mean almost nothing at all for the time being.. anything which is making her worst is sending her backwards and not forwards. She's currently in a dangerous place and if she gets much worst then she is now.. there wont be anything at all she can do to help as far as trying to conserve energy to improve, she'll be completely bedridden praying to improve.
The sicker you are.. the more important to be taking care not to trigger the ME symptoms off.

Take care not to exhaust your wife with simple things like doing too much talking.. even having fast beat music can be exhausting on a severe ME brain. She may be worst then you realise.

 

[taniaaust1]

She has post-exertional malaise, chronic colds, a persistent resiratory infection that she caught last year

If you hasnt tried it already i suggest she try a "good quality" (not the crap sold at most supermarkets) Vitamin C with also bioflavonoids (the bioflavenoids eg rutin, hesperidin etc are very important for absorption and the more of them in it the better., if u can find one with several that's very good). Powdered form of vitamin C is better then the pills as it absorbs better but the bioflavonoids are what matter the most. This would need to be taken at least twice a day as vitamin C being water soluable doesnt stay in the system long. Something like 2-3g morning and night she "may' find helpful.

The bladder infections..she could try drinking cranberry juice (if she dont have issues with fructose). Cranberry Juice in studies has been shown to help lessen the amount of bladder infections in those who get them.

The chronic sinus issue could be an issue with having a type of staph in her nose which is a TOXIN PRODUCING KIND. This issue is common in ME/CFS. I suggest she gets a nasal swab done to find out if she has staph there (if she cant leave house maybe her doctor will allow you to do it and take it into clinic). If she does have this.. they then need to test the staph to see what kind of antibiotics can be used on the staph she has (I had that issue and it was immune to three quarters of them tested against it).
For more info on this issue there is info online if you do a search (It's an area Australian Newcastle CFS researchers were studying at one point).

ps ..the burning pain after activity in ME can be due to too much lactic acid build up. One australian CFS study showed that some of us are produding up to 300% more lactic acid then usually occurs.
Also issues with the mitochondria may cause pain.

 

[bslav]

Hi - thanks for all the responses

She does have gastritis - generally under control but much much worse after the relapse. She has tried most therapies over the years. Takes as much vit c as possible but the gastritis is stopping that (2-3g/day only possible). Before the relapse she was much more able than now - only 5% or so of previous level. Says that she feels 'poisoned'. Gut is in a much worse place than a year ago (she can't digest protein (fish/meat) any more - gives her liver pain and sinus drainage issues, made worse since the relapse due to the gastritis not allowing her to take digestive enzymes and acids.

 

[nanonug]

She does have gastritis

With all the conditions you described, now including the gastritis, I think it there is a decent chance that your wife may have some form of mast cell activation disorder. Have a look at Table 1 on the following document and see how many symptoms you are able to match to your wife. She doesn't need to have them all but it is generally more telling if she has symptoms from several different systems (which appears to be the case): "Polycythemia From Mast Cell Activation Syndrome: Lessons Learned."

You may also want to contact The UK Mastocytosis Support Group for a referral.

Good luck!

 

[Sparrow]

I had a similar burning pain after exertion when I was quite bad (though mine was worst in my legs). It faded away with a lot of rest and overall recovery. I echo what taniaaust1 was saying in that aggressive resting might be very, very important for her right now in preventing her from getting even worse. For me it was a definite sign that I should not have been doing that (!). I made myself a lot worse before I clued in to just HOW much I needed to reduce my activities. I thought I was already doing as little as could possibly be done, but I was wrong. There is always a level of functioning below where we are, and consistently overdoing it will force us there.

I have learned that for me, if I am getting significant symptoms, I am doing too much. Period. If my head is burning, I've been thinking too much. If my legs are burning, I've been using them too much. When I started to take the early warning signs seriously, my condition began to improve. And I am slowly getting stronger and my capabilities are getting better and better as I continue to rest that way. I can do much more than I could before, and I feel infinitely better in the day to day. If she's that low, I would say rest, rest, rest, rest, and then when she thinks she couldn't possibly rest any more than that, keep resting. See if that helps to minimize some of the intensity.

 

[taniaaust1]

Hi - thanks for all the responses

She does have gastritis - generally under control but much much worse after the relapse. She has tried most therapies over the years. Takes as much vit c as possible but the gastritis is stopping that (2-3g/day only possible). Before the relapse she was much more able than now - only 5% or so of previous level. Says that she feels 'poisoned'. Gut is in a much worse place than a year ago (she can't digest protein (fish/meat) any more - gives her liver pain and sinus drainage issues, made worse since the relapse due to the gastritis not allowing her to take digestive enzymes and acids.

sorry to hear that.

With the vit C.. its best to take it with some yogurt (unless one has dairy issues or cant have it for another reason)

 

[alex3619]

In my experience burning pain is a warning to rest. I used to ignore it and push on. It took fifteen years after I started to pace for that level of pain to die down. Care needs to be taken.