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sureimsore

Distinguished member
Joined
Apr 14, 2016
Messages
190
Reason
DX FIBRO
Diagnosis
03/2016
Country
US
State
XO
Hey all,

It's only been 8mo since I came down with fibro. I've been tested for a hell of a lot of things, but all has come back negative except for the ANAs. So I think I may have mitochondrial damage from a medication I had been taking (unrelated to fibro).

I can't even tolerate OTC drugs anymore; I used to take a sleeping pill occasionally but when I've tried to since the fibro, I wake up with rip-roaring migraines. I just had a cat scan done with contrast, and it's wrecked havoc on my body (hurts to lift a coffee cup).

My doc is trying to convince me that drugs will help my "quality of life," but I'm petrified. If it
does turn out that I'm suffering from mitochondrial damage/toxicity, I'm afraid of making a bad situation worse.

Anyone else in the same/similar boat as me?
 
I'm seeing a Natropath, and soon a bone Dr. My ANA count is high. The Natropath is suggesting I get tested for black mold. Black mold poisening can mimick fibromyalgia symptoms.
 
That might well be the case and the only way you have to know is by stopping for some weeks and see how you feel. Best of luck!
 
I'm seeing a Natropath, and soon a bone Dr. My ANA count is high. The Natropath is suggesting I get tested for black mold. Black mold poisening can mimick fibromyalgia symptoms.

Yes, I've read that. Where I am, if its rained for a few days straight during the gray months, we get lots of mold in the areas that don't get sun exposure. And there are things in our immediate environment that can contribute to existing illness. I used to have
a flea collar on my dog, but the organophosphates are too toxic to the CNS, so no more of that.

If you remember, please post the results of that test.
 
What are you doing besides medication? I am down to Over the Counter drugs at this point, with an occasional half-pill of an anti-inflammatory or muscle relaxer, which are all I have left from my stash from my last doctor's appointment. OTC meds do take the edge off for me, but since I can't really afford medical care, I don't have any idea about mitochondrial damage or things like that. I wouldn't be surprised if there was mold in my house, but there's really nothing I can do about it at this point. I do limit my exposure to chemicals as much as possible.

Other than medication, I use a lot of heat (hot baths, mainly) and ice packs, deep breathing, stretching, and distraction. Although it sounds as if you're dealing with a lot of pain, doing as much time as possible without medication might be best for now. Another thing I'd look at would be diet. I'd eat as well as possible, based on your budget. Hopefully eliminating unhealthy food choices (if any) and replacing them with whole, organic foods as much as possible can increase your overall health and improve how you feel.
 
It is quite ok to go medless if you have mitochondrial toxicity. Medicines are in themselves toxic and have to be degraded by the liver into simpler substances. The most daunting pain occurs during the night and I reckon that melatonin would be a safe bet to induce sleep at night. It also helps to self massage with a hot sponge. Gentle prolonged exercises work best. Stress is enemy number one and has been thought to cause fibromyalgia then makes it worse. Have you heard of the U Comfort pillow that relieves neck pain? Oh! You talked about the weather. Loose woollen wear has been known to be as effective as medications.
 
What are you doing besides medication? I am down to Over the Counter drugs at this point, with an occasional half-pill of an anti-inflammatory or muscle relaxer, which are all I have left from my stash from my last doctor's appointment. OTC meds do take the edge off for me, but since I can't really afford medical care, I don't have any idea about mitochondrial damage or things like that. I wouldn't be surprised if there was mold in my house, but there's really nothing I can do about it at this point. I do limit my exposure to chemicals as much as possible.

Other than medication, I use a lot of heat (hot baths, mainly) and ice packs, deep breathing, stretching, and distraction. Although it sounds as if you're dealing with a lot of pain, doing as much time as possible without medication might be best for now. Another thing I'd look at would be diet. I'd eat as well as possible, based on your budget. Hopefully eliminating unhealthy food choices (if any) and replacing them with whole, organic foods as much as possible can increase your overall health and improve how you feel.

thanks WP for the advice. I haven't tried too may things, but overall, I just do hot coffee for the headaches and neck stiffness, ginkgo for the brain fog, and dmso gel w/aloe for the muscle pain. however I am still scared somewhat of overdoing the dmso, so I only use it when the pain hits like a 9 in severity. I find that when I eat red meat, that's when my muscles feel at their best, as long as it's a very lean meat. I do walk a precarious line with my diet right now due to NAFL and MGD in the eyes. lots of my diet is trial and error right now.
 
It is quite ok to go medless if you have mitochondrial toxicity. Medicines are in themselves toxic and have to be degraded by the liver into simpler substances. The most daunting pain occurs during the night and I reckon that melatonin would be a safe bet to induce sleep at night. It also helps to self massage with a hot sponge. Gentle prolonged exercises work best. Stress is enemy number one and has been thought to cause fibromyalgia then makes it worse. Have you heard of the U Comfort pillow that relieves neck pain? Oh! You talked about the weather. Loose woollen wear has been known to be as effective as medications.

Thanks remnant for the advice. I agree with the exercise, somewhat, lol. I force myself to walk 2miles at least every other day (I use a cane now). And I do my own housecleaning, cooking, caring for animals, laundry, etc. So by the end of the day I'm very worn out. What I used to do in 1 hour now takes me about 4.

But yes, stress is the worst. On the occasions that I get angry about my situation, I will get psoriasis-like breakout/dry skin on arms immediately. It's very bad the chemicals that are released when you are angry (I think those are the worst), so I don't allow myself--I will quickly stop the negative thinking now. I do allow myself the occasional crying jag, that makes me feel better, very cathartic :smile:

I will look into the pillow, thanks!
 
@sureimsore Emotional tears contain stress hormones, so crying is a good way to release them. I've been doing a lot of that this week, so I should be feeling on top of the world soon ;). Where did you get the DMSO cream? I've had DMSO recommended before for the Interstitial Cystitis, but via procedure (bladder instillation), not as a topical treatment. That's something I might consider, but I have always avoided it, having heard it's an industrial strength cleaner.

If you're going to go without the medications, I think it would be good for you to try other things, such as the more natural methods we've discussed here & elsewhere on the forum, such as stretching, ice packs and heat, hot baths/showers, massage, definitely walking if you can, although be sure to avoid any areas or weather conditions that could lead to a fall or strain. Even if you end up going back on some or all of the medications, at least you'll know which other tactics can help, and hopefully you'll end up staying off at least some of the medications. I really prefer to take as few as possible, especially considering some of the side effects.
 
@WP - OK, so I'm sure you know that DMSO is not allowed to be sold for medicinal use. I found some that comes in a jar, it's 70%DMSO w/30%aloe, in a gel formula. I purchased mine at a local independent health food store, but a simple online search with the formulation I typed comes up with the brand I use, it has a tree on the label. I used to run alot, and always found it helped with sore muscles. Actually, it is used by veterinarians on horses, and that is allowed. I wouldn't take it internally, that scares me, lol! But, I do take hair/skin/nail vitamins that has MSM, which is another formulation of DMSO (chemical composition is a little different). Thanks for the tips too.
 
Thanks @sureimsore, I'll have a look at that. The DMSO treatment I mentioned apparently often results in chemical burns to the urethra/bladder, which scares the heck out of me. I have enough health concerns already, without even considering trying that, and ending up in worse condition still. I'd love to find something that totally cures me of everything, but I'm to the point of believing that the only way to do that is through natural methods at this point.
 
Oh, the DMSO gel burns my skin a bit, especially if I haven't used it in a long time. And it will itch my skin like mad as well. But, the positives have outweighed the negatives for me.
When I get the "pins and needles" pain like someone is using a voodoo doll of me, it has nipped it in the bud.

Hmmm...maybe someone IS using a voodoo doll of me! : P
 
Sureimsore, new here too. Hello. Please careful with dmso, people who work with it in manufacturing get nasty health consequences. No judgement, but sharing. Feel better soon.

medless here also. Side effects yuck. Do find some relief from heat and cold packs, arnica gel, pacing myself to not overdo
 
thanks elise, I don't overdo it, and I make sure to clean hands before and after use. dmso is still widely used as a carrier agent in the medical world, but like almost everything, moderation is key.
 
I think the most important thing relating to this condition is that you should try as much as you possibly can. Doctors don't hold the answers yet, so if you do get the chance to try something that might change your quality of life then you should certainly do so. It is vital to your future health. I'm not saying that you should try everything that your doctor offers you, but I do think that you should certainly think about each thing, and consider how it might help your symptoms and improve your quality of life - being openminded is key, and this could help you a lot in the future.
 
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