Peripheral Neuropathy

[Ail_]

I have had numerous sleepless nights because of restless legs Sometimes I only have 2 hrs sleep

i take medications on prescription and over the counter pain killers Have numerous showers Am desperate to find some help Doctors have given me no treatments to follow or drugs for RLS I have been diagnosed with Peripheral Neuropathy Anyone with same problem 

🙏

[Cryssie11]

Hi Ail_ just read your msg and want to reach out and say I feel for you. I don't have RLS, but I have peripheral neuropathy in all my limbs. It starts with total numbness, then becomes tingling like electric shocks and then intense pain. It can happen anywhere, any time and at all varying levels of severity. I am on so many drugs that I feel weird all the time. I have lost the ability to focus on anything. So I don't know what to say to help you except the only way I found to get any help is you have to keep complaining. That's really hard for me anyway, because I am not a person who does a lot of talking. But I see people getting help that way. so I force myself a bit. However I am not getting better sadly. I hope you have family or friends to help you as well. I truly feel for you. I can't know exactly how you feel, but I do understand the feeling of desperation. I have come out of doctors offices and thought what a waste of time that was. But you have to keep trying until you find someone to help. Speak up and ask for what you need. And know there is another person out there thinking of you and wishing you success in finding the help you need. 🫂

[mmMekitty]

Hello Ail_

I have restless leg syndrome, & although I can't say what has helped me, I can say there is help for this condition - as Cryssie has said, you will need to keep asking, maybe seeing another GP, or asking to see a specialist, who treats the conditions you have. The cause of your peripheral neuropathy would indicate what sort of specialist to talk to about that. Unfortunately, I've understood the causes for restless leg syndrome isn't actually known, but I do have some meds that help, not cure, just help.

I also do my best to distract myself, to relax. I find when I have had a busy day, & I"m tired when I go to be, that helps me get to sleep quicker than if I am not so tired, or have waited up, maybe because I wanted to watch a tv show, past when I feel tired enough to sleep, I'll be more likely to stay awake & restless longer. I know it's frustrating & so very irritating. If you are waking with it, too, that is surely making getting good quality sleep most unlikely.

I wish you all the best,

Hugzies

mmMekitty

[therising]

Hi Ail_

I feel for you so much as you make contact with doctors who don't seem to be able to help you. In my experience, a great doctor is a great detective. They'll explore every possible clue when it comes to solving a mystery. They're packed with a natural sense of wonder and, in some cases, are happy to explore possibilities when it comes to a patient's sense of wonder (exploring possibilities in regard to what their patient may suspect could be a culprit). In other cases, a doctor can be so 'by the book' that you can't lead them to wonder beyond what they've studied or beyond their limited experience.

Being 53, over the years I've developed some mantras when it comes to the medical world, a world which has served me well and not so well at times. Just a few

• When a doctor says 'Sometimes there's no reason, it just happens' (like with blood pressure fluctuations), my mantra is 'I don't believe it. The body always behaves the way it does for a reason'
• When a doctor says 'There's not much that can be done in this case' (maybe like with RLS), my mantra is 'I don't believe it. It's time to do some research'. The latest research is often the most revealing and the most optimistic
• When a doctor says 'This is just a part of aging', my mantra is 'I don't believe it. This is/these are side effects of something'. If I was 15 instead of 53, there'd be a much deeper investigation with greater concern. I do admit to a questionable lifestyle in my younger years as having side effects as I age

I'm an almost obsessive wonderer. I absolutely thrive on a sense of wonder. A few things I wonder about: Is the RLS issue separate from the peripheral neuropathy issue or are they somehow related? Is anything related to inflammation, a vitamin or mineral deficiency, gut-brain axis issues, chiropractic issues, toxins or stimulants or medication side effects, immobility issues, lack of circulation etc? What role does the vagus nerve play in one or both conditions? The vagus nerve is a truly fascinating area of study. Known as 'The information superhighway' of the body, a lot of communication and miscommunication can happen regarding that highway. When it comes to the multiple systems in our body, including the nervous system, the vagus nerve can play a huge part. While a relatively newish area of study, it's producing some fascinating stuff.

Ail_, at the end of the day, never stop wondering and keep looking for a great detective who'll wonder and detect with you. I've found wondering alone with no answers or solutions can become so incredibly challenging, frustrating and sometimes even depressing to a degree.

[Ail_]

Thankyou so much for your reply I think your Neuropathy is much more serious than mine and you are so brave and not giving up Hope we both eventually find help My Dr recommended a Pain Specialist who suggested I have a Spinal Cord Stimulation procedure It is quite scary and super expensive and no guarantee that it will work Check it out on Google 

[Ail_]

Thankyou for your post and I sympathise with you Did the Neurologist do a test to find what caused the PN ? I do have family and friends that  are supportive but they have their lives to lead and I try not to worry them with my situation Sending healing thoughts to you 🙏❤️

[Ail_]

🙏 for your reply