Neurological conditions
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Managing my husband's Peripheral Neuropathy

Jaybee5Jaybee5 Member Posts: 5 Listener
edited June 2020 in Neurological conditions
Good Morning and thank you for my inclusion in your group.  Needing some help and support please to be able to manage my husbands' Peripheral Neuropathy.......and your thoughts, if applicable, on the use of the drug Pregablin to manage symptoms.  Thank you.

Replies

  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Good morning @Jaybee5 and a very warm welcome to the community.

    It's great that you're looking at ways to help your husband. Unfortunately this isn't my area of expertise, but hopefully one of our members will be along with some suggestions.

    However, we're not medically trained here, so we can't advise on any medication I'm afraid!
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Jaybee5

    Good Morning it’s great to meet you today.

    I am one off the Community Champion’s here at Scope.

    Here’s some info below on peripheral nèuropathy.

    https://community.scope.org.uk/discussion/69080/peripheral-neuropathy-survey

    https://community.scope.org.uk/discussion/69427/distal-sensory-axonal-peripheral-neuropathy

    https://community.scope.org.uk/discussion/70495/what-to-expect-next

    https://community.scope.org.uk/discussion/67004/peripheral-neuropathy-and-getting-tired-at-work-and-whilst-walking

    I have been on Pregabline since 2000.

    These were given to me via my Pain Clinic.

     I am taking them for my “Chronic Pain”

    @steve51
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @Jaybee5 welcome to the community. I’m Emma, one of the Community Champions. Perhaps you could speak to your GP or your husband’s medical team, they may be able to help or advise on this. The community is a lovely bunch and we’re glad to have you with us. Please let me know if I can assist you with anything else or if you have any questions at all.
  • janer1967janer1967 Member Posts: 9,246 Disability Gamechanger
    Hi @Jaybee5 Welcome to the community its great to have you on board.

    I also suffer from peripheral neuropathy and was prescribed pregabalin about 3 years ago, I find them helpful and certainly notice a difference if I forget to take any.

    I hope you husband finds some relief with his medication
  • Jaybee5Jaybee5 Member Posts: 5 Listener
    edited June 2020
    Thank you very much for your respective replies, and the very warm welcome.
    We're working very closely with our GP team, awaiting a call as I type.   I do understand that no medical expertise on here, just wondered how individuals managed with certain drugs, and if any side effects they may have experienced, what they were, for reference only.
    Thanks also for the many links, will have a look on there shortly.  Hubby keen to actually chat by phone to anyone willing to do so, maintaining confidentiality of course.
    All very new at present, and still "floundering".....great to know that support is available here.
    Thank you.

  • Jaybee5Jaybee5 Member Posts: 5 Listener
    Shout out to any newly diagnosed folks with P.N. ...very likely as a result of Chemo 3.5 years ago

    We live in Southern Hampshire, and my husband would dearly like to chat by phone to anyone who has this condition, his main concern, the rapidity of the ailment and to share any tips you may have that have helped you.
    Although in our very early 70's, we're very active, ride Lambretta Scooters, are involved with the "Scooter Scene", help manage music gigs and are involved with a big music festival annually....I manage the "Green Room" aka...hospitality area.   We want to continue doing the majority of these hobbies and any guidance with P.N.   and what to possibly expect will be great...taking into account we are all different.
    Again, thank you. 
  • janer1967janer1967 Member Posts: 9,246 Disability Gamechanger
    Hi again 

    I know you are trying to get someone to talk to your husband on the phone but unfortunately we are not able for members to post any personal details like phone numbers on the site due to data protection 

    Maybe there is a group local to you that your husband could connect with 
  • Jaybee5Jaybee5 Member Posts: 5 Listener
    Thank you.....I wouldn't have posted any personal details on site, I would have contacted any individual privately and kept details totally between the two of us. Thanks again.
  • atlas47atlas47 Member Posts: 118 Pioneering
    Hi @Jaybee5

    A very warm welcome.

    I have had a look for what support is available for PN suffers.

    The Brain Charity has a helpline tel: 0800 008 6417, open Mon 9am to Fri 4.30pm.

    Might be of assistance or point you both in the right direction.

    Has your husband considered attending a Pain Management Programme?

    I would highly recommend he should consider this approach.

    Now to more important matters!

    So you two are Mods, in the day I was a Rocker! Though my walking sticks are not compatible to riding a Harley,  oh to be young and care free again. I still watch Easy Rider, to prove I am still young at heart!

    Let us know how you get on.

    Stay kind and stay young.

    Best wishes
  • Jaybee5Jaybee5 Member Posts: 5 Listener
    Atlas47.........Thank you Rocker.......meet you on the beach in Brighton, Ok?

    Thanks for the tip, being so new into PN....is scary, but we'll get there!

    Dave and I on the "Quadrophenia" scooters after a day filming in Brighton with Granada Television some years ago.....Great Day!
  • atlas47atlas47 Member Posts: 118 Pioneering
    H @Jaybee5

    Thing  is the people in this community will think we are fruit cakes.

    They have never seen Mods & Rockers, at play!

    I could never afford a trip to Brighton, cos my bike would never make it there.
     
    Do you both  still watch “Easy Rider” ?

    Stay kind and be young.

    PS

    Hope you both enjoy, your green room.

    Been to one Rockers, green room meeting, got trashed and lost my virginity, 

    Though I have been with my wife, for last 47 years.
  • RonniRonni Member Posts: 162 Pioneering
    I hav Poly nueropathy of the pheriphal.. which even spell.  Which is basically head to to motor and sensory loss. Numbness pins needles. Over sensitivity to touch  shoes are a nightmare,  blamckets everything. The body can swell twitching restless leg. Grip. Continuous pain and muscle spasms. Legs weak only stand to transfer. The bed is a nightmare. Yr brain isnt able to send proper messages to the rest of your body and body doesn't send mags properly to the brain. 
    I dont take painkillers they not necessarily right thing for me.  Even if every touch is painfull. That's because I have others issues and allergies. We interpret the pain oversentively.  Effects every differently. I've had mine over 15 yrs. My tips might benefit him. If he mono spherical one side  arms or legs or  axel cant spell that but refers to the joints.
    Different pains and different ways off getting through it.  Good luck
  • chiariedschiarieds Community Co-Production Group Posts: 8,049 Disability Gamechanger
    Hi @Jaybee5 - & welcome to the community from me too. Pregabalin can be helpful with both central & peripheral nervous system problems. I have been taking it for the former for many years. I have thought perhaps it wasn't helping, & decreased the dosage very slowly 3 times to come off it.... & then went back on it again, as realised it was definitely helping. Now, like @janer1967 , I find if I forget to take a dose, I really feel it.
    My last GP had me taking it 3x a day; my current GP thought taking the same daily dosage, but split into twice a day was, he'd found in his patients, more beneficial.
    The most reported side-effects of it are weight gain, which has never affected me. Here's some info about it, & reported side-effects: https://bnf.nice.org.uk/drug/pregabalin.html
    Oh, I'm just a bit younger; I would have been a Rocker! Great photo of you both; thank you for sharing. I'm with atlas47.... 'Easy Rider' is brilliant. :)


  • chiariedschiarieds Community Co-Production Group Posts: 8,049 Disability Gamechanger
    Hi @Jaybee5 - Thank you for your message on my wall. I've been looking for what may be the best resources for you both. You may have been in touch with Macmillan Cancer Support previously. They had the best patient information about chemotherapy induced PN I could find : https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/peripheral-neuropathy   so this makes me wonder if you might get more specific advice there. Tel: 0808 808 0000 open daily 8am - 8pm.
    I also found some mention that duloxetine can be helful for PN. My own GP recommended I try this if Pregabalin wasn't helpful in my case. As we're all individuals, I'm not recommending it, & you need to take any med for a while to see if it's going to work. Also it may be contra-indicated in your husband's case, so, as ever, the best person to discuss this with is his GP.
    I stumbled upon an article that was very interesting about acupuncture from January this year: https://www.bbc.co.uk/news/uk-england-manchester-51195500    so I looked into The Christie Foundation NHS Foundation Trust, who have a 24 hour 'Christie Hotline' on the side effects of cancer treatments : 0161 446 3658 so you might consider contacting them: https://www.christie.nhs.uk/
    After that I looked online, & found some recent medical literature that also seemed to indicate acupuncture could help some PN sufferers, where this was due to chemotherapy.
    As @atlas47 mentioned above, the Brain Charity is another resource as well as a pain management programme.
    Physiotherapy may also be helpful depending on how your husband is affected. When this is possible again, your GP may recommend it. For now here's some info about pain from the Physiotherapy Pain Association: https://ppa.csp.org.uk/content/links
    If pain is a problem, quite often it's a combination of things that helps make it more manageable. I use this breathing exercise daily: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf
    I've also found cannadidiol (CBD) effective, & have been taking it for nearly 2 years. If you want to know more about that, please say. :)
  • atlas47atlas47 Member Posts: 118 Pioneering
    Hi @chiarieds

    Just a thought, have you tried looking on the Cochran Library, it holds data bases for all published medical research, from around the world.

    All that is published, has been reviewed, by experts in this country.

    Would have a look, but have hay fever, which is fairly bad a the moment.

    Let us know if you find anything.

    Stay kind and be safe.
  • chiariedschiarieds Community Co-Production Group Posts: 8,049 Disability Gamechanger
    edited June 2020
    Hi @atlas47 - Thank you for the info. I did look around, but didn't find out much more. I have allergy problems (like having hay fever all the time), so sympathise, but have been fairly OK the past few days.....hope you improve soon.
    I tend to use PubMed, as when medical papers cite reviewing the available literature, this often, as well as showing Medline, Embase, shows other databases (including Cochrane Central I've just realised)!
    @Jaybee5 - I've tried to find out more, but feel I've been unsuccessful. There's this link: https://www.acupuncture.org.uk/public-content/public-pr-blog/6852-new-uk-research-confirms-acupuncture-benefits-for-chemotherapy-induced-peripheral-neuropathy.html    which again mentions 68% of those in the acupuncture group benefited.  I eventually found info at the Christie Foundation (I had expected it to be under their 'Research' link, but no it was hidden away) :https://www.christie.nhs.uk/about-us/news-at-the-christie/latest-news-stories/christie-research-shows-acupuncture-helps-chemo-patients
    Sorry I haven't found out more. Please keep in touch, & let us know how you're both getting on. :)
  • Pixie51Pixie51 Member Posts: 59 Courageous
    Hi there
    I have peripheral neuropathy just dx was diagnosed with sb occulta and fibromyalgia many years ago. Chronic back and leg pain along with crawling, pins and needles, restless legs, spasms etc. I took yp Hatha yoga on the suggestion of my consultant and went on to train as an instructor and have recently qualified as a relaxation therapist. Has your husband tried any relaxation techniques and or yoga /pilates? You don't need to be able to bend  double! The gentle stretching linked to deep breathing techniques can really help with muscle release and increased oxygen into the body. 
    Yoga heals the soul 🙏💖
  • SussexAndySussexAndy Member Posts: 15 Courageous
    Jaybee5 said:
    Shout out to any newly diagnosed folks with P.N. ...very likely as a result of Chemo 3.5 years ago

    We live in Southern Hampshire, and my husband would dearly like to chat by phone to anyone who has this condition, his main concern, the rapidity of the ailment and to share any tips you may have that have helped you.
    Although in our very early 70's, we're very active, ride Lambretta Scooters, are involved with the "Scooter Scene", help manage music gigs and are involved with a big music festival annually....I manage the "Green Room" aka...hospitality area.   We want to continue doing the majority of these hobbies and any guidance with P.N.   and what to possibly expect will be great...taking into account we are all different.
    Again, thank you. 
    Hello Jaybee

    I've been diagnosed with CRPS "Complex Regional Pain Syndrome"  following Chemotherapy in 2014.   Its Similar to Peripheral Neuropathy and Fibromyalgia.   Your husband has CIPN - Chemo Induced Peripheral Neuropathy.  Which was one of my early diagnosis before my CRPS matured and the characteristics of CRPS become more prominent. 

    CIPN and CRPS are treated exactly the same way, where managing the symptoms is the only treatment available. Although everyone is effected differently to various levels, the long list of symptoms remain the same.  Managing or discovering how to manage the main symptoms helps a great deal.  With CRPS I live in pain 24/7 with regular flareups. Worse in winter months or when the weather becomes stormy.  

    I've been on Pregablin now for 3 years, which is better then Gabapentin.  But both will cause us all to gain an incredible amount of weight.  Fact of the medication unfortunately. 

    You may also want to talk to your GP about adding an SRI to his medication.  SRI`s belong to the anti-depressant medication family however these are Serotonin Reuptake Inhibitors (SRI) which means he will have more serotonin in his system which helps with pain management.  He may also consider having Testosterone boosts which also helps with pain management. 

    If he suffers with inflammation which is most likely.  Then he would benefit from high levels of Vitamin C and B12, I personally take 1,000mg Vit C and 1500ug B12 everyday.  Certain foods really help with inflammation also Turmeric is  fantastic, but you can also have Dark Chocolate and Red Wine which becomes medicinal of cause :-) 

    I use electric heat blankets to help with the pain and I am about to start near Infrared light therapy which looks promising. 


    Love that your reaching out to the community as a concerning wife.  Sadly my marriage did not survive when I became disabled.  I've got high hopes that you will be OK.    My only comment is that he will most likely have a lot of low points where he cannot do the things he used to do on a daily basis.  he will be upset and angry, just remember that its the disability and not you.

    I would be happy to talk.

    All the best 

    Andy 


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