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anyone have burning, aching legs?

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15
@rd123 Hey, that’s great! I hope you get quick, positive affects. Please let us know as soon as you can determine results. I’m curious if you will go
ahead and add the 2 supplements, Pantothenic Acid and A-L-Carnitine or wait and see?
I have them in my cart, but if I get on the combo, I will wait so I know the pos/negs are attributed too, you know what I mean. But, I will leave them in my cart, so I can always add them in down the road.
 
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15
I think it is worth looking into, even though it is rare. I truly believe that there is someone out there that will be helped by @TrixieStix sharing this information which is the true beauty of these kinds of boards/groups.
Agreed, I plan on mentioning it at my next appt. at any rate. If it is a co-immune disorder, it makes sense to me tht it would effect more people w/ this illness too.
 

Nanni

Senior Member
Messages
148
I have had CFS for over 6 years. My legs, especially lower legs ache and burn like I have run a marathon after only being on my feet for 10 minutes. Its getting worse. Does anyone have this symptom? Any suggestions on what to do about it ? Right now, I just have to pace myself carefully. Thanks.
I have a similar problem although I can be on my feet longer. Just have more pain. I have chronic pain from post surgical nerve damage and take pain medication. This leg pain is not eased by the medication. It’s a constant sharp aching. Sometimes it’s the one thing that can get away from me and i can get very anxious from it.. I’m sure it’s involved and is more complex than this.Here’s my very tiny bit of intuition. Two things It seems like inflammation. I admit that i am addicted to sweets and I know that is bad for inflammation. I’m better since cutting way back on carbs. I used to fall down after what felt like the blood rushing out of my legs. But I still eat a lot of plain goat yogurt with palm sugar. It’s a lot of sugar still. I’m sure a better diet would be so helpful but how to pull that off is my greatest challenge and why I am always reaching for ready to eat yogurt.. I’m going to try to get the bone broth in the carton. Is that a total waste. I’m not sure about how to get on top of this diet/no energy vicious cycle The second time it got worse and it’s been increasing is since getting into addressing methylation and 23 and me. My detoxing ability is not great and that balance of riddling junk isn’t what it should be. Almost feels like it’s filling up in my legs. What a thought but that’s kinda how my legs feel.
 

Nanni

Senior Member
Messages
148
Such great information. I’m thankful as well.I don’t know why my leg pain can be the thing that puts me over the top. My acupuncturist related it to stomach disorders. I have noticed that when my leaky gut is acting up my legs are worse. I’m guessing that affects how well I’m absorbing nutrition. I get constipated from pain medication and i need my magnesium. I can tell when I’m not absorbing enough of it. And the pain is a little better when I remember to take my electrolyte powder. I’m amazed my pain medication doesn’t help my legs at all. I get this awful anxiety from my leg pain. Anyone else get that?
 

Nanni

Senior Member
Messages
148
Hi LJbluesky, if you have been well tested to rule out other diseases, you could try D Ribose. I’ve been on it for about two months, and I can only describe it as brilliant!

According to the theory of Dr Myhill and co, the central cause of ME is Mitochodrial failure. The Mitochondria are the energy producing part of every cell in our bodies, they make ATP that gives as energy, when they are not working properly your body switches to anaerobic Metabolism, which causes a rapid buildup of lactic acid which causes the muscle burn and pain. It is all explained in this article
http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure


As well as D ribose, you also need to take Magnesium, a deficiency in this alone will cause muscle pain, Coq10 and L carnitine and B3, but it has been the D Ribose that has made the most dramatic difference for me. Although Dr Myhill doesn’t mention it in the article, it is very important to get tested for and treat, any Vitamin D deficiency that is found, this is because although the other supplements will help to heal the mitochondria, vitamin D is needed for the body to absorb phosphorus, and you need phosphorus to make ATP, so if you don’t fix any Vitamin D deficiency, you can end up with Mitochondria that work, but the ATP that is produced is defective due to a lack of Phosphorus and you remain sick.

I’ve been taking 5g of D ribose three times a day, and the other supplements, and a strong multivitamin, plus lots of sun, and the improvement has been great!! Muscle pain has gone!

Theres more on D ribose here http://www.endfatigue.com/tools-support/D-ribose.html

And an interesting article on it role in heart function here http://www.lef.org/magazine/mag2007/may2007_cover_ribose_01.htm

D ribose is supposed to be completely free of side effects, unless you have diabetes, so have a read of the articles and see if you want to give it a go.

Hope this helps

All the best
I’m so sorry about quoting your whole post. I’m hoping to get a tutorial this weekend. What is the multi vitamin you take. I’m trying to get more balance in my supplements. I know everyone’s different. I also take the supplements you mentioned, I’ll feel better then worse so I think it’s getting the doses and combinations right .
 
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15
Updating progress, @Stretched and @TrixieStix. Have been taking the Celebrex & Famvir combo since early Feb., the really sharp painful burning in feet went almost away, or I thought it had majorly improved, legs /feet still swell/hurt but I could stand without them hurting immediately like they were. However, I finally saw the podiatrist today, and he imm. diagnosed Reynaud's syndrome in my toes/feet, and most likely hands as well. Now I have to find out if it is primary or secondary, I am guessing secondary due to my age onset/symptoms matching secondary, so looked up Sjogren's syndrome and I have the vast majority as well. So leaning to that as of now, so have to call primary to get testing done ASAP.

Does anyone have exp. w/ what I should be testing or leaning too try? I really thought I was doing better, and had been feeling somewhat better for about a month or so, and now I am just feeling more tired since starting the new combo/more sinus probs/headaches/swelling/hurting again, I chalked most of that up to the wild & whacky weather, but I just don't know anymore. anyway, that is my current update.

edit: Podiatrist gave me a Cortisone shot in each foot for the Reynauds.


@Slugger @LJBluesky my legs swell entirely, all around from my thighs to my toes, it initlly was just feet/calves would swell up and look huge, now it effects thighs as well, worse when being on them for any length of time. Have had major lower leg pain for 10+ yrs, increasing w/ time. Sounds very familiar. I thought for a long time it was inflammation response as well.

Any help is appreciated, will update if I find out anything from primary.
 
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Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
Update from Dec, 2016. Pantothenic Acid help with the burning feet as well as ALA And the Dr. Scott Pridgen protocol, Celebrex and Famvir.
 
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TrixieStix

Senior Member
Messages
539
@rd123

I hope you can get in to see a good rheumatologist who can test you for Sjogren's and other things. Do make sure you keep in mind that being negative for the 2 Sjogren's antibodies (SS-A & SS-B) they test for in the blood does NOT mean Sjogren's can be ruled out. If you end up being seronegative a lip biopsy done by someone who knows what they are doing would be the next step as lip biopsy is considered the gold standard in Sjogren's diagnosis. But even a negative lip biopsy doesn't rule Sjogren's out completely.

I forget. Did you ever have a skin-punch biospy done to test for Small Fiber Neuropathy?