anyone have burning, aching legs?

[juniper]

I too have pain in my lower legs, starting just above my knes and going all the way to my feet. Majority of pain rests in my knees, calves and ankles, and this is gets worse as the day progresses to the point where it is excruciating in the late afternoon/evening.

Interestingly my cfs doc recommended spine xrays for this, as problems with lower spine could be the cause of pain in lower legs - I'll be checking with my rheumatologist this week and can report back on this as a possible line of investigation. Until then i survive on constantly elevating my legs wherever/whenever possible, OTC pain drugs (that don't really do the job) and pregabalin that i take for back pain...as wellas ice/heatpacks

 

[Stretched]

I too have pain in my lower legs, starting just above my knes and going all the way to my feet. Majority of pain rests in my knees, calves and ankles, and this is gets worse as the day progresses to the point where it is excruciating in the late afternoon/evening.

These symptoms can also identify with vascular disease, i.e. plaque in the femoral arteries which can manifest as gradual increasing pain down the legs into
the feet... .

 

[Stretched]

BTW, as addendum to my post, above, #60, I came across another source for dealing with burning feet, as I recall, from ‘Handbook of Natural Medicines.’ it’s Pantothenic
Acid, Now Foods (available from regular supplements stores, eg Amazon). I bought a large bottle and have tried 1 cap, twice daily for the last month. It does seem to partially help - with the burning/pain sensation, but not the deeper ache, at least not yet. FWIW, This is one I would and have increased MDR on the label (for therapeutic dose.)

 

[Mollymolly]

Yup same her dull pain , burning very painful I tell a doctor and they looking at me like what are you talking about ... when I say that I am experiencing partial paralysis, I cry all the time from pain and no it is not easy to walk beyond my understanding how sever it is and just because you can't see it like broken leg it is much harder to get any pain relieve ...

 

[Mollymolly]

Yes pain and burning legs also back ..

 

[TrixieStix]

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.

Have you been tested for Small Fiber Neuropathy. It's done via a simple skin punch biopsy from the leg. I have Small Fiber Neuropathy and for me it causes symptoms like those you describe (along with others).

 

[rd123]

Someone mssg'd me, so I am going to update my experience best I can to date:

Still having major bone pain & edema/swelling has only gotten worse. My feet & legs swell the most & arms/shoulders, but everything does now with minimal exertion. My feet/toes have been getting really swollen to the point of not being weight bearing, my toes the pads are swollen like they are little hammers & I have developed "blister" type purplish spots on several of my toes(the ones that are swollen/swell the most). I noticed the spots back in Aug. on my L foot(which was always my worst side, so used R more), and then they started on my R foot, and I was having difficulty standing/ being on them at all. I was already limiting myself to no more than about an hour at a time being on them, due to the pain/swelling & crashing from PEM 48-72 hrs after minimal activity, so if I do anything for 1 hr. I wait 7-8 hrs before trying to do anything else like shower(my feet get bright cherry red in the shower, and now I have noticed that I have red bands that go up inside of my legs from the ankle up past the knee, this is new for me, or I did not notice it like I do now, and I know of no reason for it, and it is in the same place each time on both legs(again I think a cicrc/vascular issue). Saw my Dr. & they did not know for sure what the toe spots were, I "thought" it was blister/rub spots from them swelling so much, but they weren't sure. They suggested a Dermatologist or Podiatrist, since I think it is a circulation/edema issue I went w/ Podiatrist & see them in Feb. I did see a Neurologist for my legs back in 2016, and they said I had mild peripheral neuropathy, and w/ not much they can do & cost of seeing, I have not seen again from my initial visits/scans.

I already was very limited activity wise, I go out to the stores once a week/10 days, and do not do anything days before doing that, or after. I try to do one big thing a week, but limiting to no more than an hour or so on my feet, like vacuum/laundry/etc..but it is a battle, the swelling & pain make it very difficult. I also have stomach issues after exertion, or if it is hot/etc.. It is vey much dancing on a razors edge at all times, and the very bad days I can go from being OK to just totally uncomfortable & super irritable. It feels like every nerve is firing and nothing helps, I just try to sit and relax and hope it passes. Weather is def a factor.

I still take 5/325 Hydrocodone & .5 Xanax together w/ 500mg of Acetaminophen 3x day, and Ambien 10 mg every night and Benadryl about 30 mins before taking the others. I also take a multi-vitamin 2x day & L-lysine 1000mg a day. Some days I sleep OK, others not well at all and feel like I have been hit by a truck. I do not know what to do about the swelling, and am hoping the Podiatrist has some idea what to do that will help, otherwise I really don't know what I will do. I am not looking forward to the heat again at all. Getting tired hope this helps, and I haven't forgotten anything.

TrixieStix Small Fiber Neuropathy, what is your treatment for that? & has it helped you?

 

[rd123]

I forgot to mention my feet/toes lower legs get very, very cold in winter, like ice blocks, my Dr. can tell a sig diff. just by touch. I was reading a few of the other threads, I also have inner ear issues/chronic sinus issues/inflammation/etc.. I am of the mind that inflammation is what I am having the worst experience with, and why I can blow up so bad so quickly. I think that is the key of this illness.

 

[Stretched]

@rd123 I know what you mean about legs and feet burning. Feet and toes can get icy at bed time. (See my post, up a few spaces). I just reordered the Pantothenic Acid, which does help and it’s reasonably priced. I also got a king size over-mattress heat
pad. It warms those otherwise icy feet.

One thing you might want to check out is the hydrocortisone - for bloating.

BTW, Three weeks ago I started the Dr. Skip Pridgen protocol for the Fibromyalgia part of CFSFM. It’s simply Famvir and Celebrex. It has already kicked in and the systemic pain and neuropathic feet pain have significantly diminished. I feel better as well.

There are a number of articles on his discovery (google); here’s a short one for quick access:
http://nationalpainreport.com/antiviral-combo-may-be-next-blockbuster-fibromyalgia-drug-8830327.html, excerpt:

“Many herpes viruses are known to significantly upregulate COX enzymes in the body, which in turn are important for efficient viral replication,” he explained in a media release. “In theory, physical or emotional stress in patients can reactivate the virus and result in perpetuation of the symptoms of fibromyalgia.* Effectively suppressing latent viruses may significantly improve the pain and related symptoms of fibromyalgia.”

*IMO, same for CFSME

 

[Gingergrrl]

I haven't read this whole thread but I get pain/cramping in my calves that wakes me up at night. It's happened for years off & on and currently happening again but I think it's b/c I am using my legs more. I already take prescription Potassium (20 MEQ every night) and Mg Malate. When it is bad I take salt stick capsules, pain pill, and put heat on it.

 

[rd123]

@rd123 I know what you mean about legs and feet burning. Feet and toes can get icy at bed time. (See my post, up a few spaces). I just reordered the Pantothenic Acid, which does help and it’s reasonably priced. I also got a king size over-mattress heat
pad. It warms those otherwise icy feet.

One thing you might want to check out is the hydrocortisone - for bloating.

BTW, Three weeks ago I started the Dr. Skip Pridgen protocol for the Fibromyalgia part of CFSFM. It’s simply Famvir and Celebrex. It has already kicked in and the systemic pain and neuropathic feet pain have significantly diminished. I feel better as well.

There are a number of articles on his discovery (google); here’s a short one for quick access:
http://nationalpainreport.com/antiviral-combo-may-be-next-blockbuster-fibromyalgia-drug-8830327.html, excerpt:

“Many herpes viruses are known to significantly upregulate COX enzymes in the body, which in turn are important for efficient viral replication,” he explained in a media release. “In theory, physical or emotional stress in patients can reactivate the virus and result in perpetuation of the symptoms of fibromyalgia.* Effectively suppressing latent viruses may significantly improve the pain and related symptoms of fibromyalgia.”

*IMO, same for CFSME

Thanks very much @Stretched , I tried Valtrex in Dec. b/c I also believe in this theory, but it alone did not seem to help too much, but I was only on it for like 3 weeks. Can I ask what is the dose for the Famvir/Celebrex combo is and does your ins. cover it? I will be calling Monday to try that out ASAP. I firmly believe it is a reactivation of virus and all the cytokine issues, chronic inflammation, as the latest studies have shown. I have major sinus issues every day, clogged/drippy/allergic to most anything chemical(MCS). Thanks again for your help!

 

[Stretched]

Thanks very much @Stretched , I tried Valtrex in Dec. b/c I also believe in this theory, but it alone did not seem to help too much, but I was only on it for like 3 weeks. Can I ask what is the dose for the Famvir/Celebrex combo is and does your ins. cover it? I will be calling Monday to try that out ASAP. I firmly believe it is a reactivation of virus and all the cytokine issues, chronic inflammation, as the latest studies have shown. I have major sinus issues every day, clogged/drippy/allergic to most anything chemical(MCS). Thanks again for your help!

It sounds likes you’re in tune on the theory, for me and a lot of others a reality. Pridgen appears to have had a lot of success. I, too have Valtrex in my stash as a backup but this basic Pridgen combo seems to work to the point of being able to stop tramadol for pain.

Insurance would otherwise cover them (as it did Valcyte; no good for me) but I buy my rx’s online from the usual sources (see online pharmacies here by @Hip).
I believe the doses to be standard basic starting doses. They typically sell this way and if you need higher doses you simply buy multiple units. My regimen of one each, daily is working. I may up it later if needed.

BTW, I use OTC Allerest for runny sinus allergies (generic is chlorapheneramine maleate). I tried different rx ones but this seems most effective for me. Add Tylenol + Advil
togethergive same pain relief as narcotic.
(Google: Nov 8, 2017 · In a randomized, double-blind clinical trial—the gold standard of
trials—a combination of ibuprofen (Advil) and acetaminophen (Tylenol) was just as effective at treating patients with acute pain in an extremity as three other pain-killer combinations containing opioids.)

If the combo works for you it should indicate so pretty quickly, e.g, ~2-3 weeks, if not sooner. I hope you get some relief. Please post your results.

 

[rd123]

It sounds likes you’re in tune on the theory, for me and a lot of others a reality. Pridgen appears to have had a lot of success. I, too have Valtrex in my stash as a backup but this basic Pridgen combo seems to work to the point of being able to stop tramadol for pain.

Insurance would otherwise cover them (as it did Valcyte; no good for me) but I buy my rx’s online from the usual sources (see online pharmacies here by @Hip).
I believe the doses to be standard basic starting doses. They typically sell this way and if you need higher doses you simply buy multiple units. My regimen of one each, daily is working. I may up it later if needed.

BTW, I use OTC Allerest for runny sinus allergies (generic is chlorapheneramine maleate). I tried different rx ones but this seems most effective for me. Add Tylenol + Advil
togethergive same pain relief as narcotic.
(Google: Nov 8, 2017 · In a randomized, double-blind clinical trial—the gold standard of
trials—a combination of ibuprofen (Advil) and acetaminophen (Tylenol) was just as effective at treating patients with acute pain in an extremity as three other pain-killer combinations containing opioids.)

If the combo works for you it should indicate so pretty quickly, e.g, ~2-3 weeks, if not sooner. I hope you get some relief. Please post your results.

@Stretched Thanks very much, yes for me it is a reality too, and need to change if possible, I keep hoping. I will try to see if I can get them, not sure if my ins. formulary covers the Celebrex, the Famvir is on the formulary, but monthly limits, so will have to see. I have tried Prednisone in the past, in regards to your Hydrocortisone suggestion, but I broke out very badly w/ little bumps on my back/shoulders, not pimples, just raised bumps all over, it was uncomfortable as well. So haven't tried any other steroids since. Will try the Allerest as well. Thanks very much for your help.

 

[Stretched]

I have tried Prednisone in the past, in regards to your Hydrocortisone suggestion, but I broke out verybadly w/ little bumps onmyback/shoulders, not pimples, just raised bumps all over, it was uncomfortable as well. So haven't tried any other steroids since.

@rd123 ’‘Sorry if I was unclear, but my intention was to call your attention to Hydrocortisone (or any steroids) as a candidate cause
for the bloating and related problems you described. Indeed, large or long term use of these steroids are reported to cause all kinds
of visible systemic problems. Thus, my intended suggestion was to watch your use. IAE, ‘glad you caught it, i.e. not to use them.

 

[TrixieStix]

TrixieStix Small Fiber Neuropathy, what is your treatment for that? & has it helped you?

The first thing doctors try to do when there is evidence you have Small Fiber Neuropathy (SFN) is to try and figure out what the underlying cause of it is in the case where the cause isn't already known. In a % of people though an underlying cause is not found and they are labeled as having "idiopathic SFN". In my case we don't know the exact cause of my SFN at this point, but it's looking like autoimmune disease could be the culprit. I was just recently diagnosed with a very rare autoimmune disease called "Relapsing Polychondritis" (RP). While RP itself does not cause SFN a significant % of those with RP have at least one additional autoimmune disease. Also many RP patients develop vasculitis so it remains to be seen if I have vasculitis and if so could it be the cause of my SFN?

As for treatments for my SFN, thus far I am not taking any thing other than pain medication to help with my pain. I tried Gabapentin in the past and had to quit due to side effects, and I refuse to try Lyrica. My hope is that now that doctors have finally figured out what is actually wrong with me the proper treatments for RP (daily Prednisone and also a DMARD such a Methotrexate) will also treat whatever additional underlying condition is causing my SFN. And if it's determined I do have vasculitis as well then I do not know what that could mean in terms of the SFN and treatments for it.

 

[rd123]

@TrixieStix Yes from what the neuro told me it seemed pain mgmt. was about the only thing at the time. I wonder about the vasculitis too, since I swell up so badly, it just feels like I am constantly inflamed for lack of a better term. On my feet/legs, they blow up, use my arms/shoulders, they blow up, nose gets any allergen or irritated in any way, it blows up, this happens pretty much everyday, I wake up w/ my nose being very swollen, it goes down after I am up for awhile, but it is constantly a problem. I am going to try a few things @Stretched suggested too, to try to get things better managed hopefully. I called my Dr. to get on Famvir & Celebrex, they have to call me back as yet, but that sounds like the most promising thing I have read for awhile. CFIDS/ME is def an immune disorder IMO.

I looked up the RP, and I have much of those symptoms as well, my ears will get red & burn for no apparent reason, nose issues, joint issues everywhere, rashes. How did the Dr. diagnose this? specialist or? curious now after reading about it, seems too familiar. Thanks again for everyone's input, it is much appreciated.

 

[TrixieStix]

@rd123 Relapsing Polychondritis is very rare so chances are it's not RP. However it never hurts to rule one more thing out. This is a good source of information about RP (you can create a Medscape account for free to access the entire thing)....

https://emedicine.medscape.com/article/331475-overview#a5

* In the past 4 months I began to experience this exact thing as seen in the above illustration (ear, cheek & nose all red/inflamed & painful at the same time). It doesn't show it very well, but almost always with RP the ear redness spares the lobe because there is no cartilage in the lobe.

 

[rd123]

Thanks @TrixieStix I do have a lot of those symptoms, and it is just the cartilage that burns on my ears/gets br red. I have the nose/facial redness, throat/neck issues. If I talk for any length of time/which is rare nowadays I will get very hoarse too. A few months back I had some issues w/ my R eye bothering me, and I rubbed it a few times, well the next day it was fully swollen/lids and below, barely see and looked like I had been punched. That was the 2nd time I had that happen, I don't know what is behind that, so I do not rub my eyes, or try not to touch them too much. They will get heavy lids/swell up sometimes without any cause that I can figure out, except for the underlying sinus issues, which is what I have been attributing it too. I had that yesterday as well. I will keep the RP in mind though for sure now if I notice more issues. So many issues w/ this illness, hard to know for sure what is right/wrong.

@Stretched Dr. called back today, and looks like it will be a go on the Famvir/Celebrex combo, so here's hoping.

 

[Stretched]

@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?

 

[Gingergrrl]

I will keep the RP in mind though for sure now if I notice more issues.

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.