Peripheral neuropathy

[Micafe]

Hello all!

I have such a lot of health problems and here I am again.

Besides my long list of pains I have Peripheral Neuropathy. I have a few questions to people here who also suffer from it. I am not a diabetic but I had cancer and my PN was caused by chemotherapy. I always say chemo destroyed me. It made my life miserable. I blame it for all my health problems.

I read somewhere that PN and RLS could be related. What do you think? Of course, RLS is another of my problems. Sigh.

I'm very familiar with the symptoms of PN, but I'm not 100% sure about some of the things I feel. When you have both PN and Fibromyalgia you can never be sure which one is making you feel what.

I have two questions for people who have PN whether it's caused by diabetes or by chemotherapy or any other reason, for that matter:

1. Do you feel your PN has been getting worse with time?

2. Do you feel as if there were bugs, let's say ants, biting your legs all the time and you have to keep scratching? Or as if someone were poking your legs with a needle? This is driving me crazy.

I appreciate your help.

[ldwilliams]

You have not said which Peripheral Neuropathy you have, each condition have their own symptoms, treatments and causes?

You say that you are "very familiar with the symptoms of PN" and then go on to describe one of the classic symptoms in many/most Peripheral Neuropathy the as if it is newly discovered.?

[bookish]

Hi, might be worth looking at Dr Anne Louise Oaklander's work - try searching 'Oaklander YouTube' and watching Small Fibers, Big Pain (Radcliffe). She and colleagues have found that about 50% of diagnosed fibro is actually due to Small Fibre Neuropathy. Of course I don't know if your fibro pre-dates your chemo neuropathy, but maybe the neuropathy isn't all from the same cause. If you can track down cause/s you may be able to treat better. Although I'm sure your 'ant' description applies to many neuropathies, formication ('ants crawling on skin' sensation) is a classic B12 deficiency symptom, so should be checked properly. A neurologist sounds like a good plan. A neuro just diagnosed my SFN. Cheers

[Micafe in reply to bookish]

Hello.

I was diagnosed with fibromyalgia not too long before my cancer. It was almost like they came at the same time. Lucky me.

According to my last blood test , my B12 is normal.

I'll check the SFN online. Never heard of it before. I'm seeing my oncologist the day after tomorrow, I'll see what he has to say about that. Thanks a lot!!! I really appreciate your advice.

[bookish in reply to Micafe]

Sorry that you are having so much to deal with. Obviously without wishing to get you to give more information (better not as this is public - you might prefer to lock future posts to make it a bit more secure) - but if your cancer was oestrogenic/hormone related, you might just find that the root cause of the fibro/SFN and cancer is connected, and to be honest, possible even if not hormone. One of the possible genetic variants linked to fibro is COMT which controls an enzyme that breaks down neurotransmitters (adrenaline, dopamine etc) and also oestrogen (catechol oestrogens). COMT impacts also on methylation, which needs to be functioning well to metabolise and properly get rid of oestrogens (and metals, toxins) rather than just recirculate and absorb them. Might be worth checking how well your liver is functioning and if you are detoxing properly. (I have the COMT and MTHFR and poor detox/liver and high relative oestrogen, fibro/SFN). If you actually have a figure for B12 and it is good (not just 'in range') you might be ok - but don't dismiss it. Mine was low but 'in range' but still needed to supplement (B12 and folate) to start to lose some of the neurological symptoms and improve my methylation and COMT. All are interlinked. If you are detoxing badly the medication/chemo etc may have had a disproportionate effect. Hope the oncologist is nice and easy to talk to and you can make some sense of it all x

[Micafe in reply to bookish]

Thank you so very much. You sound like a very nice person. I really appreciate it. My oncologist is a very nice, cordial and understanding person. As I said, I'll be seeing him tomorrow (Tuesday), it's still Monday here 😊

[bookish in reply to Micafe]

Thank you! Best of luck with your appointment x

[ldwilliams]

There are many different peripheral neuropathies, each with their own causes, symptoms & treatments, although many of those have crossovers with each other.

I would definitely see a neurologist, but be aware that many of the conditions are diagnosed without defined tests, more a case of ruling out what it isn't. Be prepared for a number of tests because of that.

Good luck!

[Cb1963]

Hi,unfortunately my PN was brought upon by heavy drinking alcohol, please don't judge me by this as I had witnessed a terrible accident, and it caused PTSD, and alcohol was my way of dealing with the trauma of the incident, yes my PN has got worse over the years 8 now, there are many ways/feelings, or pains to describe this horrible condition, and the list is endless, unfortunately I suffer with B12 deficiency issues now,which also doesn't help the symptoms, so you'll find the way people explain PN a varied and long list, treating it,well,that's something that hasn't got a very good outlook, as far as I know there isn't anything that can cure the pains, and there's no silver bullet to alleviate the symptoms really, there are medications out there, but they only take the edge of the pains away, however, I was reading an article on the BBC teletext service saying that they were getting a positive feedback from patients who were receiving acupuncture who had been receiving chemotherapy for cancer treatment so perhaps there is light at the end of the tunnel, I hope this little bit of information helps you,its not a pleasant condition, and keeps many people awake at night, hopefully I'll find a cool spot to put my feet in bed lol,any further questions, I'll be more than happy to reply.

[orangecity41]

I have been diagnosed with Pre-Diabetes and do have Neuropathy (Hereditary Motor Sensory, and Peripheral) . I also have Chronic Kidney Disease. I also have feeling of pins in my back and sometimes my legs, and also feel like bug bites on my legs. I take gabapentin and it helps me. I am glad to have found this forum.

[Patient001]

PN=Peripheral Neuropathy

Answer to questions: 1. No, not getting worse over time, 2. No bugs, only mild needle sensation and burning in the feet. I have been taking psyllium husk and it seems to help me with both PN, and for sure acid reflux. I've talked to other people with PN and they can't figure out the cause, or the solution. They said they've tried everything and only putting their hands in cold water helps.

[orangecity41]

Yes I to have felt the pins and needles. I am 79 years young and have several medical conditions to deal with, I have motor sensory neuropathy with myelin sheaths thinning and also peripheral neuropathy of ankles and feet. I also have Chronic Kidney Disease that might be contributing . So far medicine and some physical therapy has helped me. My neurologist also advised me to use support socks which help. Hope things get better for you.

[Hooha215]

My PN has gotten worse and pain in legs is diabolical. I also have the feeling of crawling skin. To be honest the only thing that helped me start sleeping through the night was medical marijuana. I tried cymbalta, tramadol and a host of other medications but found they either didnt work or too many side effects. Worth a try to smoke in the evening.

[Pain223 in reply to Hooha215]

I don’t smoke-is there an oral type equivalent?

[Micafe]

Thank you.

[Harriet57]

I was diagnosed with PN three years ago though I must had symptoms and problems with my feet burning for over 10yrs , I’m 45yrs now I tried gebapentin & all those pain meds but thy didn’t agree with me and just gave me bad side effects until I read somewhere that homeopathy does help so I asked my doc to refer me thru the NHS as private practices can be expensive- Try seeing a homeopath though they can be expensive if go through the private route, I live in England so was referred to NHS homeopathy. They put on some small pills and thy have helped reduce my pain and I sleep better at night, I was having difficulty sleeping at night due to the burning & tingling pain in both my feet getting up so many times in the night to soak my feet in cold water to ease the burning. Since I started on the homeo pills the burning & tingling in my feet has reduced, also had tingling in my hands though I tried on one lot that didn’t help much recently had a pill change and these seem to work. PN is a complicated disease I find now I have pain my knees and most joints, finger & all I am being tested for arthritis but I think it’s all PN related. Good luck hope you find something that helps though u need to hve tests and to confirm that this is what is causing yo pain

[Hidden in reply to Harriet57]

Would you be able to share the pills please? I am t the end of trying everything, would like to try them, after making an apt with homeopath of course.

[Hidden in reply to Hidden]

the name of pills, not the pills lol