How many of us have neuropathic pain/damage; both peripheral and autonomic?

[TCP36]

Most people I know with ME have the neck and shoulder pain. I have it too more so when stressed and tense or if my gut is particularly bad. I get regular flare-ups now, but my friend in N Ireland has it all the time. Tension from reading too much and PC work doesn't help or even too long lying down. My feet have always been painful with ME from sore and aching to burning. This dates back to 1984. Now I realise the nerve link as over time I can put all the pieces together.

I use a circulation booster and a bike exerciser (while sitting on the couch), to boost circulation, especially when it's cold. You have to do what you can.

 

[anniekim]

That is interesting! I also have degeneration in lumbar and cervical spine and have had it for years. I have often wondered if there was a link. I think if nerves are damage they will respond to stressors like immune/neuro/endo issues as with ME relapses. It is an enigma!

That is also interesting about the Vistide treatment having an effect. May be worth looking into! Take care

As a fellow Brit, I don't think we have much chance of getting visitide prescribed here in the UK sadly, it's an expensive anti viral

 

[TCP36]

Is there no alternative over here? I have paid for some treatments privately.

 

[LiveAgain]

I have POTS, have been diagnosed with ME/CFS, sensory neuropathy diagnosed by skin biopsy, and my Neuro thinks autonomic neuropathy based on Valsalva autonomic test results. The pain I experience is burning in my feet and crushing pain in my feet and legs. Recently my hands have started to burn so I'm wondering if it's spreading. TCP - how were you diagnosed with the peripheral and autonomic neuropathy?

 

[TCP36]

I have POTS, have been diagnosed with ME/CFS, sensory neuropathy diagnosed by skin biopsy, and my Neuro thinks autonomic neuropathy based on Valsalva autonomic test results. The pain I experience is burning in my feet and crushing pain in my feet and legs. Recently my hands have started to burn so I'm wondering if it's spreading. TCP - how were you diagnosed with the peripheral and autonomic neuropathy?

Hi. Sorry to hear how this is effecting you. The POTS shows there is autonomic dysfunction, anyway. Mine spread up my body, but I have since learned things that would have helped, like keeping calm, eating mainly veggies, low carbs, no gluten, drinking lots of water, raising my bed at the head end, taking extra salt, nerve aiding supplements etc.

I pretty much diagnosed what was wrong, like with the ME and the doctors concurred. Mine although coming on very slowly, then accelerated rapidly and I was hospitalised. I was very scared, but know now that it wasn't going to kill me! There's a lot of help around and I found out so much from the internet about things to take and do to help things and it has stopped me worrying. I hope this helps. If you need any ideas or tips please message me

 

[Tristen]

As a fellow Brit, I don't think we have much chance of getting visitide prescribed here in the UK sadly, it's an expensive anti viral

The drug isn't gonna work for everyone anyhow. As far as I'm aware, it's only effective with CMV. Yep, very expensive......$900.00 a pop (US$). Also, even here in the US, one would be very hard pressed to find a doctor willing to use such a dangerous drug, especially for a year like I did.

I haven't been following CMX001 now for some time......It was in clinical trials and is the oral form of Cidofavir (Vistide).....much cheaper, safer, and more effective. My doc feels strongly it will be one of the best drugs for treating a significant number of people with me/cfs.

 

[camas]

Daily Zyrtec put an end to the constant paraesthesia in my limbs and helped the neuropathy in my feet. (I have no idea why this worked, and neither did my doc.) I still take the occasional Gabapentin if my feet flare, or if I have overall achy FM pain.

 

[TCP36]

Does CMV cover the Epstein Barr Virus, too?

 

[TCP36]

Daily Zyrtec put an end to the constant paraesthesia in my limbs and helped the neuropathy in my feet. (I have no idea why this worked, and neither did my doc.) I still take the occasional Gabapentin if my feet flare, or if I have overall achy FM pain.

That is interesting, too. I'm on Gabapentin, 2,400-3,600mgs per day. I would love to come off them!

 

[vli]

As a fellow Brit, I don't think we have much chance of getting visitide prescribed here in the UK sadly

IF you can convince a private doc here to give it to you, then getting it is in fact no problem, as I tried to enquire by calling Gilead in the US (who makes vistide) who told me to try IDIS pharma in the UK. IDIS told me they have no problem selling it to whoever prescribes it to you in the UK, it's GETTING SOMEONE who'd prescribe it that's impossible.

 

[TCP36]

IF you can convince a private doc here to give it to you, then getting it is in fact no problem, as I tried to enquire by calling Gilead in the US (who makes vistide) who told me to try IDIS pharma in the UK. IDIS told me they have no problem selling it to whoever prescribes it to you in the UK, it's GETTING SOMEONE who'd prescribe it that's impossible.

Well you never know. I got LDN prescribed privately over here. Thank you!

 

[camas]

That is interesting, too. I'm on Gabapentin, 2,400-3,600mgs per day. I would love to come off them!

That's the level my boyfriend's at for his diabetic neuropathy. He also takes 25mg amytriptyline before bed which helps calm his feet so that he can sleep. I'm sorry you have it so bad.

 

[Tristen]

Does CMV cover the Epstein Barr Virus, too?

No CMV and EBV (Cytomegalovirus & Epstein Barr) are both of the Herpes family but different bugs. I really don't know if Vistide would be effective on EBV or any of the other Herpes Viruses. I only know that the drug books have it indicated for CMV and that's what I was on it for. Well, it's most commonly used for reactivated CMV in AIDS patients.

I would also say that these viruses are ubiquitous and do not cause chronic illness in most people. Therefore, the decision to use such a dangerous drug needs to based on clinical assessment as well as good labwork.

 

[TCP36]

That's the level my boyfriend's at for his diabetic neuropathy. He also takes 25mg amytriptyline before bed which helps calm his feet so that he can sleep. I'm sorry you have it so bad.

I also take Duloxetine at bed-time. I took Amitriptyline and Nortriptyline at bed-time, but it made me too sleepy during the day. I have tried a few different ones. As long as you can rest at night and tolerate your meds, it all helps, doesn't it?

 

[heapsreal]

i find tramadol good but have to be careful using this while on antidepressants. I find it energizing so only use it during the day and mainly for back pain but have used it for neuralgia i get in my legs at night when pain has been bad and unable to sleep and did sleep afterwards but then again i think pain is tiring so treating helped and i just konked out.

 

[TCP36]

No CMV and EBV (Cytomegalovirus & Epstein Barr) are both of the Herpes family but different bugs. I really don't know if Vistide would be effective on EBV or any of the other Herpes Viruses. I only know that the drug books have it indicated for CMV and that's what I was on it for. Well, it's most commonly used for reactivated CMV in AIDS patients.

I would also say that these viruses are ubiquitous and do not cause chronic illness in most people. Therefore, the decision to use such a dangerous drug needs to based on clinical assessment as well as good labwork.

Yes, I realise they are both in the herpes family. Has any really good research been done into EPV as it has precipated the on-set of ME in a large percentage of sufferers? Has there been any definitive findings?

Vistide is quite potent and can be lethal, can't it? I don't fancy renal failure or cancer. Obviously there have been recorded cases involving both of these.

Yes, EBV is a strange and complex disease. I know even healthy people who recovered from it have been left with some problems and weaknesses, if not ME. I know it was the start of my health issues.

 

[TCP36]

i find tramadol good but have to be careful using this while on antidepressants. I find it energizing so only use it during the day and mainly for back pain but have used it for neuralgia i get in my legs at night when pain has been bad and unable to sleep and did sleep afterwards but then again i think pain is tiring so treating helped and i just konked out.

i know this helps some people. I personally can't take any narcotic or narcotic-like drug as I get very sick. It's about what works for you, isn't it? It will make you very sleepy.

 

[heapsreal]

i know this helps some people. I personally can't take any narcotic or narcotic-like drug as I get very sick. It's about what works for you, isn't it? It will make you very sleepy.

yes about what works, it is amazing how different we all are with the same illnesses and issues.

 

[TCP36]

yes about what works, it is amazing how different we all are with the same illnesses and issues.

Indeed! We all have different types and levels of tolerance, like with foods and meds etc. You have to try different things to see what suits us. I often become less tolerant to drugs and foods, so have to adjust every so often. Trial and error, I suppose.

 

[Tristen]

Yes, I realise they are both in the herpes family. Has any really good research been done into EPV as it has precipated the on-set of ME in a large percentage of sufferers? Has there been any definitive findings?

Vistide is quite potent and can be lethal, can't it? I don't fancy renal failure or cancer. Obviously there have been recorded cases involving both of these.

Yes, EBV is a strange and complex disease. I know even healthy people who recovered from it have been left with some problems and weaknesses, if not ME. I know it was the start of my health issues.

To the best of my knowledge yea, EBV is the trigger for some, but for most of us it's just a reactivation of an old latent infection......it's a downstream problem, most likely nothing to do with cause of me/cfs; But, I have not followed this issue and really not in the know on that. I just know that my own EBV goes in and out of reactivation. It's currently dormant, for lack of a better word. It appears to me that it just reactivates along with fluctuations in my immune function. I think the same is true of all the infections I carry. They lay dormant until my immune system loses the upper hand (due to added stressors), and the bugs party. I get more ill.

Yes, Vistide is a very dangerous drug. When offered the Tx, I was extremely sick and ready to do anything. Plus I trust my doc who has been dealing with me/cfs for 30 years. He informed me of it's very serious risk potential but also then said there was a good chance it would help me. I said bring it on. It brought tremendous relief without blowing out my kidneys or causing other serious side effects. Not everyone is so lucky. I've seen several others in his practice get better on the drug. Some tolerate it, some do not. It's definitely not for everyone. Bottom line is being fully informed of the risk vs benefit potential, diagnosis showing one may benefit from the Tx, then deciding if it's for you.