How Other People With Neuropathy Feel

Today's post from nhs.uk (see link below) is a series of responses to a very good and inclusive general article about neuropathy on the same page (worth a read). The names have been removed here but if anyone objects to anything published, let me know and I'll remove it directly. The responses show the range of feelings and experiences other people have regarding neuropathy and I'm sure many readers will recognise themselves in some of the comments. Sometimes, you can feel better purely from knowing that you're not alone dealing with a disease and that is the aim of this post.

Patient Comments about Neuropathy

t said on 01 July 2013

Just logged in and found this site - can't believe there are so many people feeling the same as me! Have been in pain for at least 3 years with my feet and feel I must add to these comments. It seems that GPs and podiatrists in some areas do not believe there is any help to be given for neuropathy - ie there is nothing we can do but don't get depressed about the pain! To try and explain the pain is like trying to explain what it would be like to win the lottery (big time). I've been diagnosed with diabetes for approx. 10 years and wasn't treated correctly so have not only changed hospitals, but also districts for my treatment. Today I have been told that there are treatments that can help relieve some of the pain. Hurray!!

c said on 24 April 2013

I am at my wits end with tingling, burning and pins and needles in my feet. I have had this on and off for six years but it seems now I have it all the time.
I have lumbar spinal problems namely spondylolthesis, stenosis, disc protrusion, and facet joint arthritis. As if thats not enough pain I now get the feet bothering me too.
I cant walk very far and going round the supermarket is awful as all I feel is the pins and needles in my feet.
I waited six months to see the neurosurgeon and am now waiting on an up to date MRI ( been waiting forever ). He has suggested a spinal op but would be a waste of time if itnever took the foot problem away. I am on gabapentin, Amitriptyline, co-codomol, diclofenic, 3 blood pressure tabs and surely rattling . GP is no good as doest know what wrong with my feet.
Thinking of going to see podiatrist privately but dont know if it would help. Who knows. Im only 58 and it seems a bit young to have all this. Fed up as every painful day the same.
Any help would be appreciated

C

KG said on 22 March 2013

I was diagnosed with PN this year I am 68 and I am not diabetic, when I was told I had this problem I was offered no treatment at all I was not even told how to deal with it I had to write to the neurologist and ask what I should do and how it would affect me long term and all I got back was "take these 2 pills and see if they help and you may have some Muscle loss and that was it so please do not tell me we have an all caring NHS.
The tingling I get in my hands ,legs, feet is awful I try to keep very active but when walking down the High Street all I want to do is stop and scratch.
I would welcome any good advice.
Thanks

ms s said on 01 February 2013

Hi guys, so sorry to hear of all your pain(s)
Much like a lot of you, My father-in-law is suffering with severe pain due to Diabetes type 2 and also seems to be suffering with Peripheral neuropathy in his big toe! He has got to the point where he cannot sleep due to the horrific pain worsening at night time. He has been prescribed Gabapentin along with pain killers etc..
We have been looking into different thing that may help i.e Tens machine and now have been recommended 'Revitive V3 Circulation Booster' does anyone here have any experience and/or advice? I worry about using anything electrical when it comes to Nerve damage, the reason I ask this question is because I have also suffered nerve damage due to a Viruis called 'Ramsay Hunt Syndrome' I also took Gabapentin, various people suggested I try the Tens machine and other stimulants to help repair the damaged nerves but then later I was advised this would actually do more damage to the nerves
Sorry for essay!!! but I would apprecicate any knowledge and advice any of you may have!

I wish all of you some sort of relief from your suffering

Many Thanks
S

T said on 11 September 2012

I am coming up to two years suffering from Small Fibre Polyneuropathy. Tried all the antidepressant & anti-epileptic medication for pain to no avail. I am managing on 50% pain relief with opiates & tramadol. Alas, I am awaiting medical retirement from my job as it has mainly affected my hands. I wear gloves most of the time as a barrier to the sensitivity and a speech recognition programme for the computer.

Sleeping is the worst, isn't it? I'm currently trying things like camomile tea and fresh cut lavender from the garden by my bedside for that. But I (as are probably yourselves) well acquainted with 1am and 3am when the tramadol wears off!

The stiffness has become more lately, sometimes I walk like a cyberman or feel that my legs have turned to concrete overnight! I am Diabetic, but before all this I was very fit, a friend of the gym and a passionate cyclist. Ate well kept sugar levels nice and low. But the doctors believe the damage was probably done by undiagnosed diabetes years ago :(Life has changed, but now I am trying to work with it rather than fight it. Anyone who wants to stay in touch please fee free :)
I wish you all well

sl said on 15 February 2012

Hi, I have a bit of peripheral neuropathy following kidney failure. I haven't tried the following cream yet, but Google:

capsaicin cream

I think you can only get it on prescription. It might work for some.

am said on 24 January 2012

I recently found out that I was also suffering from peripheral neuropathy, something i did not even know before.... the pain is excruciating especially at night is the worse time. My mobility has gone from bad to worse now. I am 39 years old, but feel like I am much older! I am currently being given gabapentin to ease the pain... I have undergone all sorts of tests during my week in the hospital but the doctors were amazed by my condition.... I would not wish this pain to my worse enemy! It depresses me now to see myself slowly becoming less able. I refuse to walk with a stick which was given to me on my discharge at the hospital. All i can do is just make sure my legs are well covered as they get very cold and painful when they are cold.

L said on 18 November 2011

By chance I discovered that an alkaline diet improved things - much less pain. Also avoiding smoked meats and preserved meats is worth trying

B said on 05 July 2011

I have had PN in my feet for over 12 years. I am now 60. The cause is unknown although I do suffer with degenerative spine disease. In the earlier, poorly controlled stages, I suffered a lot with burning, tingling and shooting pains, which were almost unbearable. Parts of my feet are now numb and the muscles in my legs ache. Over the years, I have tried everything from gels, foot baths, various zombie producing drugs . . . the list goes on.
In recent years the pain has been controlled with a neuropathic painkiller. Three years ago I was referred to a pain clinic and was given epidurals, which helped for a few weeks. Eventually the pain clinic suggested I take a homeopathic dose of Methadone (4.5ml a day). I have been on this for over two years and combined with the neuropathic painkiller, it makes a huge difference to the quality of my life. It makes you feel a bit tired but you get a really good nights sleep - the latter a real benefit at 60 !

c said on 18 March 2011

Hi I'm a podiatrist and some of my patients who experience hot and tingly feet at night often report some relief using a deep cooling gel. Another tip is to stand up and try walking on a cold surface like the kitchen floor for a couple of minutes. Hope this helps.

g said on 11 March 2011

I have Type 2 diabetes and have had neuropathy for 18 months - worse at night. A cradle to keep bedclothes off feet is helpful. I had NHS acupuncture and laser treatment with no relief. Specialist said it's successful in two-thirds of cases. I get good sleep after taking sugar-free Amitriptyline prescribed by GP but next day I'm left feeling like a zombie.

bl123 said on 11 January 2011

I am 45 years old and have had peripheral neuropathy for almost 3 years. I have type 1 diabetes, which was diagnosed sixteen years ago. By my own admission my diabetes was not well controlled in the early years, but for the past 3 years has been well controlled. I suffer very badly all the time, the only time I ever get any relief from it is when I finally manage to drop off to sleep from sheer exhaustion. I can't remember the last time I had a good nights sleep. I too have been on Tramadol, Duloxetine, Meptazinol, Pregabalin and Gabapentine. I have also been treated with creams, TENS machines and last month I also had injections in my spine, which I had high hopes for but unfortunately only lasted for the day I had it. I am at my wits end with pain and everyday is just another day of suffering, which is making me extremely depressed. If anybody has any ideas or suggestions, I would love to hear from them.

dm said on 21 December 2010

I have Common Variable Immune Deficiency (CVID) 22 years, and 6 years ago was diagnosed with type 1 diabetes. Like 123dI have suffered with diabetic neuropathy for over 12 months, and similarly have great difficulty getting a decent nights sleep. My GP has prescribed all manor of pain killers including Tramadol but nothing works. I also suffer from lower back pain and pain in some of my joints but that has been attributed to the CVID. I try to maintain good diabetic control but frequently have high sugars. I find that the pain in my legs and feet is worse at night, even an evening in front of the TV can be uncomfortable and sleep is almost impossible. I would give anything for some relief from this and I hope that I will gain some information through this site.

123d said on 28 September 2010

I have had diabetic neuropathy for over 12 months,i have been diabetic type 1 for 25 years ,recently i have been having a very lot of pain in my feet and cannot get more than 2 hours sleep a night and no pain killers that my doc has prescribed works,also my diabetes is well controlled but i am starting to sweat a very lot during night,could this be a new problem,i also suffer from a lot of back pain and pain in my shoulders could you please help

http://www.nhs.uk/conditions/Peripheral-neuropathy/Pages/Introduction.aspx

People With HIV Deal With Their Nerve Pain Better Than Most

Today's post from relief.news (see link below) talks about how people living with HIV have lived with the disease and the pain that often goes with it - sometimes better and with more resilience than people without HIV in their lives. Up to 40% of people living with HIV suffer from neuropathy. Nobody's has got to the bottom of why this happens. It's assumed to be a side effect of long-term HIV medication, or the virus itself attacking the immune system, or a combination of both with other factors thrown in. Considering the stigma that is still attached to HIV, it makes a pleasant change to read an article that shows that HIV patients can actually live with the pain far better than the rest of the population faced with the same pain levels. An interesting article...worth a read.

The Role of Resilience and Physical Activity in HIV-Related Pain By Relief Staff December 13, 2016

How is HIV-related pain different from other types of chronic pain?

People living with HIV experience pain similar to people with other chronic conditions. For example, people with HIV can have similar nerve pain in the feet and legs as diabetics. The significance of our study is that HIV-positive patients react to their pain differently.

Many people with moderate to severe chronic pain find it difficult to move around. But we found that, in contrast, HIV-positive people who had chronic pain were still active.

There were two parts to our study: we measured activity and resilience (or a person’s ability to cope with adversity). We wanted to see if HIV-positive people with pain moved less than those without pain and if resilience affected how much they moved. We also wanted to know if resilience affected how much pain they felt.

We measured activity by getting participants to wear movement detectors over two weeks. It helped us understand how much patients with chronic pain moved and how much time they spent being active each day. The overarching finding was that activity levels did not drop as pain increased.

In previous studies, women who suffered from rheumatoid arthritis spent large parts of each day not moving. And similarly, women who experienced really bad period pain moved much less when they were menstruating.

But people living with HIV and chronic pain did not stop their usual activities, despite the pain they experienced.

To measure resilience we used a questionnaire developed by pain researchers in the U.S. Researchers from Europe have used this questionnaire to assess resilience in patients experiencing chronic spinal pain. They found that people who were more resilient coped better with chronic pain and were more active.

Our assumption was that the more resilient patients were, the more active they would be. This assumption proved to be incorrect. Resilience made no difference to activity levels. We also assumed that resilience would lead to participants experiencing less pain. But that wasn’t the case either. Patients who were more resilient did not have less pain.

What type of pain do people living with HIV experience? How common is it?

One in every two people with HIV experience pain. This includes headaches, chest pain, back pain or frequently peripheral nerve pain in their feet and hands.

The pain can be moderate to severe and can be caused by the immune system’s response to the virus or can co-occur with it. The pain does not tend to go away when patients go onto antiretroviral drugs. Some drugs have been shown to inadvertently induce pain. While the pain can be short-lived, it can also become chronic.

So what factors did play a role in activity levels and why?

There were two reasons why HIV-positive people with pain may have continued to be active: financial stresses and stigma.

We found that younger participants, unemployed participants and those that worried most about getting food were the ones who were more active. It seems they relegated their pain to a lower priority.

Our study also showed that stigma often stopped people from talking about their pain and may have motivated them to keep active.

We asked the participants with pain who they spoke to about their pain. Nearly half of the patients had not told their closest friends and some had not disclosed this to their family. They said they feared that talking about their pain might reveal their HIV status.

Why are these findings important and what’s next?

The HIV-positive patients who were more resilient were more satisifed with their health.

HIV-related pain is really difficult to treat. Improving resilience, for example, with psychological treatments, may be one way of improving patients’ satisfaction with their health even if their pain stays the same.

With other kinds of chronic pain, people who keep active do better. But sometimes, pushing through pain can actually make pain intensity and disability worse. In this study we looked at how pain affects activity in HIV. Now we need to look at how activity affects pain.

We know that for patients with other kinds of pain, social support is really important to help them cope. HIV-positive patients may go without social support if they conceal their pain. We need to understand how they cope instead.

The impact of HIV stigma on pain also needs to be investigated.



Editor’s Note: Antonia Wadley, PhD, is a postdoctoral fellow in the School of Physiology, Faculty of Health Sciences, at the University of the Witwatersrand in South Africa. Wadley is originally a physiotherapist from the UK but now researches HIV-related pain. Wadley and colleagues published a recent study on the role of resilience and activity in HIV-related pain. The interview below, where Wadley describes her recent work, was originally published in The Conversation Africa, and is reprinted here with Wadley’s permission. Also see a related YouTube video on the study here.
 
http://relief.news/the-role-of-resilience-and-activity-in-hiv-related-pain/