Vintage Pammy has non diabetic Peripheral Neuropathy :(

Vintage Pammy has non diabetic Peripheral Neuropathy   :(

Hi my name is Pammy and I have PN Peripheral Neuropathy. I am new to being connected to any support group but at the risk of totally going round the bend, I thought I might ought to do something productive and join in a support group. If nothing else by some of the posts I have read and responded to I am not alone in having this! And tells me I am not imagining this.

I started having problems about 12 years ago and going through a divorce at the time my gp suggested my pain was more emotional than real pain. However after many trips to see him he finally reluctantly sent me to a Neurologist. After 3 MRI's and a number of nerve conduction studies and a very lengthy 3 hour appointment I was diagnosed with PN. I am a non diabetic and this has been inherited from my mothers side of the family where the men all had it. Thanks mum!

I have pain and burning all the time in my hands, fingertips, feet, shin and calves. It started out with shooting pains in my feet that felt like I was plugged into a socket. Random pain that I just couldnt get rid of. This has now moved to my fingers and hands. I have tried a whole host of medication some worked and a lot didnt. I put on nearly 4 stone but now after stopping Lyrica I am slowly loosing yay me! I have now learned through trial and error what I can take and not blow up and go boom!

So now I am on 250 mg Tapendatol 2 times a day, 100 mg tramadol 3 times a day, 1200mg Gabapentin 3 times a day, 10 mg Dizapam if I need at various when I need, 15 ml or 30mg Oralmorph when I need for break through pain or I can take 30 mg morphine if I see it coming further and have the time to wait for it to take hold and work. I have tried various antidepressants that made me feel awful so I wont go there again. At the moment everything is working okay and that is a good thing because trust me there has been no less than 12 changes in medication in the last 5 years! Mind you that things always change in the face of NP! lol

As we all know having an illness you cant see brings all sorts of problems. I know my journey will be long and hard especially with my benefits. PN is a real illness that no you can not see. The DWP does not always want to recognise that it is real. Even though my neurologist who trained for many years knows this to be a real illness was questioned on my last paperwork that got kicked back by them. I dont know anyone with this illness would to choose this as a lifestyle choice. Pain 24/7 is rather difficult to put into words on a booklet that ask the same questions but in different ways. The DWP has this way of trying to get people to trip up on their answers in booklets they use to assess our illness and then double back like a secret spy trying to get information that benefits only them. However being knocked off and on my benefit like a yo yo is at best frustrating. More on that later.

So this has taken me 3 days to write what I have because my fingertips are so sensitive lol. I can only do things in short bursts before my fingers feel like they are ready to pop off. I will write more as I learn how to work this site and ask questions as they come up. Until then I hope that I might have helped someone with the story about medication ect ect...Take care for now with whatever you have and I pray you have a pain free day!

27 Replies

oldestnewest
  • Really sorry to read of your journey and even more sad you have to take so much medicine. That must surely be difficult for your liver to process.

    I am wondering if your pain has an underlying or root cause. Could it be LOW B12 - when B12 is below 500 - it can become a neurological condition. Please check out the website below - and scroll down for the all the signs and symptoms. It is a VERY common condition and rarely picked up by GP's. Or when you are at the bottom of the range - they will say all is well. Sadly not.

    b12deficiency.info/signs-an...

    Click onto Films on the Menu of the above website and watch the videos to learn about how important B12 is. I would also suggest the book - Could it Be B12 ? - by Sally Pacholok. Amazing information.

    I would also look at having your Thyroid correctly tested - and not just the TSH - you also need the FT4 - FT3 and Thyroid Anti-bodies tested to have the WHOLE picture. Anti-TPO and Anti-Tg are the anti-bodies.

    Click onto my name at the top of this post and you can read my journey. As I hurtle towards 70 I have found health by optimizing my Thyroid Treatment and I have regular B12 injections along with a tray full of supplements :-)

    Both Thyroid and B12 Deficiency are being missed constantly at GP level. I have been on the Thyroid UK forum here on HU for over 4 years and I am also on the PAS forum for Pernicious Anaemia and B12 Deficiency. Take a look on both - have a read - and see what you think.

    thyroiduk.org.uk

    Happy to answer any questions you may have. I am not a medic - just a Hashimotos sufferer with a B12 issue due to surgery.

    Also check out the website of Kelly Brogan and read as to why anti-depressants do not work. You can sign up for a Newsletter.

    Lots to read and lots to learn - it is the best route to wellness :-)

  • Thank you so much I am going to my GP in the morning to quiz him on this. If nothing else I will start taking it myself just to make sure I have enough B12 who knows it might help. I am certainly willing to try anything once maybe twice if it works! :) Thank you so much for the advice.

  • You know thinking about this I am taking Thyroxin for an under active thyroid. I have never had those tests you mentioned. I am going to ask for an update on my thyroid issues. It cant hurt can it! Thank you so much for the info, it wouldn't had been anything I would had asked or even thought of! Big hugs x

  • Yes the active thyroid hormone is the T3 - and is rarely tested. EVERY cell in your body needs T3 - trillions and trillions of them. So the T4/Levo you are taking is a storage hormone and does diddly squat in the body. It must convert into the ACTIVE hormone T3. So when it is low or you are not converting then things go wrong in the body.

    The most receptors for T3 are in the brain and the second highest amount in the lining of the gut. The T4 you are taking will only work in the body if your have OPTIMAL levels of B12 - FERRITIN - FOLATE - IRON - VITD. They are all involved in the process of converting the T4 into T3.

    You really need a B12 level result before taking the lozenges. B12 does not work in isolation in the body - it also needs B9 or Folic Acid - so you will also need a GOOD B Complex.

    How much T4 are you taking and how do you take it ? Do you realise the many pills you are taking could be negating your Thyroxine and there will be reduced benefits ? Have you checked ? Has your GPO advised you ? Seems to me they are just giving you pills and sending you on your way without looking at your overall health. How can I look at your picture and immediately think - thyroid ?

    When the thyroid is low then so are all the vitamins and minerals I have detailed above. You need ALL those testing too.

    Please click onto my name at the top of this post and you can read my Profile and journey to wellness. I had to have surgery on my spine due to PN which I now realise was due to LOW B12 for too many years. I believed the Docs when they said normal - it wasn't and my spine is damaged.

    I do not take any pain relief - and I have just taken a yoga class of 5 and will have another on Monday. Have a read through my posts again and hopefully there is something there that will shine through for you. We have to take control of our own health. Hope things went well for you at the Docs. I would like to be a fly on the wall. Don't forget to obtain copies of all your blood tests - they are legally yours - Data Protection 1998. You need to monitor your own progress.

    :-)

  • Hi Marz couldnt get an appointment today so am going tomorrow. I will of course be in touch . I am going to tell him everything you have pointed out. Yes I do at times just feel I am given more tablets and pushed along. You have given me a lot to think about and I am very appreciative for your advice. I hate having to take so many spread over every 24 hours. I have asked many times if I needed so many but have always been told yes. Just goes to show everyone that perhaps taking tablets is not necessarily the answer. I will have a mooch through your Journey into wellness. Again I thank you for giving me so much good information.

    Pammy x

  • You are welcome. Am not expecting your GP to be receptive - as they have so little knowledge about thyroid or B12. They earn more for the Practice doling out AD"s etc than they do Thyroid or B12 treatment.

    Spend some time on Thyroid UK Forum and you will soon notice the struggle people have. Also the excellent knowledge and help from them. Over 42,000 people and a very active forum.

    Good luck with the Doc. ☺

  • VintagePammy

    How did your visit to the Doc go ?? :-)

  • Hi Pammy, so sorry to hear of your troubles with PN. I too have been struggling for many years with it & recognize & empathize with your feelings of desperation & frustration. It may not be life threatening, but it is most certainly life changing. I hardly recognise myself from the person I used to be. I stumbled across this site last night when I was, once again, researching PN & pain medication. Sometimes, when it's particularly bad, I feel as though I'm losing my marbles & can't believe that modern medicine doesn't have an effective answer. It's early in the day & I'm having a particularly difficult spell just now, so it's a major effort to think & write, so I`ll stop now & maybe we'll communicate another time. When I read your post, I just had to reply. Hang on in there ~~ you are most certainly not alone! Wishing you & all others who are struggling, the very best.

  • Hi sweetie Thank you so much for writing I know the struggle! I do at times use the rubber on a pencil to type. I use that to play words with friends lol it works and lets me do something beside dribble at both ends and watch the telly. I am so sorry you are having a bad morning, lets pray the meds catch up and make it a reasonable afternoon and evening for you. I know that loosing my marbles your talking about. It makes me so depressed at times a good cry is what I have to do just to straighten out my thoughts. At times my pain is fairly well managed but the key is not to over do it, over do anything. It can make me spiral downward and takes me days to recover. I have taken morphine just for the break through pain tonight. I did too much today. I just hope that it doesnt take a week to recover! Fingers crossed :) I do hope you have a pain free evening and a fantastic tomorrow! xx

  • Cheers, Pammy, I liked your humour! The day we lose that, we'll really be in trouble. I improved as the day went on today & even managed to get out to a choir I sing with. I have discovered, much to my astonishment, that singing really helps lift my spirits & helps to distract me from my body. It's also a good way to meet nice people when there's been very little socializing in your life. We don't sing serious stuff, so there's a great deal of laughter involved & I just love it. By the time I get home, my feet & legs are burning & stinging intensely, but it's worth it. Tomorrow I hope to be able to attempt an introduction to a Drumming Circle with many of the same people. I know that two nights running is really pushing my luck, but there are some things that are worth paying the price for & others that are not!

    I`ve learned the hard way that the price to be paid for any activity is totally out of proportion to the actual energy expenditure of the activity, so mostly, I`m very much a home bird these days & am very selective about when, where or if I go out. How about you? What helps to keep you sane?!

    Well I guess it's time to settle down & try & get some sleep. The pain in the feet & legs always feels worse at night, although I have discovered that 30 minutes of Mindfulness meditation can be great in helping me get to sleep.

    I hope this finds you in reasonable form & that you're having a bearable night. Sweet dreams m`dear! xx

  • Chris , I feel the same way ! How in the world did I work for all these years and then BAM !!! I'm in constant pain ! It's depressing !

  • Hi, Welsey, yes, it is depressing, but I distinctly remember someone saying to me that being in a state of constant pain & weakness was bound to be both depressing & frustrating. In fact it would be abnormal for any human being not to be depressed under those circumstances. So, hallelujah! We're normal ( whatever that is!)!. However, that knowledge doesn't actually help us deal with the situation & I`ve learned over the years that the lower I let myself sink, the harder & higher is the climb back up. I'm actually astonished at how resilient the human spirit is, because I`ve been in some pretty deep pits since all this started & always, always, something changes, either internally or externally & the slow climb back up starts again until the next wave of being overwhelmed happens. So now, when it's all too much, I surrender instead of fight & I remember that I just have to "hang on" & wait for things to ease even a little bit. And they do. That helpless, overwhelming, hopeless feeling passes in intensity at least. While it's bad, I try to divert myself in any way that stops my mind from dwelling on how awful I feel ~ a good film or book or, if I can, I`ll try some meditation, which helps to calm me. I get a lot of help from books ~ Tara Brach`s Radical Acceptance, Jerry Hicks`books. There's loads out there. It's putting them into practice that's the challenging bit. Before this happened, I was a P.E. teacher & I played International badminton. I was really fit & have gone from that to this. There's no real understanding or logic to it that I can find or see & believe me, I`ve looked.

    So there you go ~ you are most certainly not alone in how you feel & there's no doubt it can feel the absolute pits. We can either sit in those feelings or we can find our own way of coping. Good luck & I truly hope things improve for you.

    Wishing you all the best,

    Chris

  • Hi Pammy. I had idiopathic neuropathy for 25 years. I was diagnosed with diabetes last year. Now on metformin. On 3600 mg gabapentin per day. You are on alot of medication. My neurologist would never give me morphine. You are not alone. It is pain constantly. I also lose feeling and fall down alot. I am getting a scooter. Too many falls luckily nothing broken. Talk to you later. Bethany

  • Hi Bethany my goodness 25 years. I have only had this since about 2000 so really 16 ish years. Prior to that I had been back and forth to the dr with pain in my heels that was dismissed as just heel pain from my shoes. I used to wear high heels all the time. Havent worn a pair of heels for more than 10 years now and God I miss them! Mind you I still have 45 pairs of shoes trying to find a pair that I can wear without pain has been a nightmare! I have found that crocs are a firm favourite that everyone in my family hates me wearing when I go anywhere with them because I like to match them to my glasses and outfit! hehe!! That might just be an age related thing, I am 54 lmbo! Just recently a friend who has feet problems but not PN gave me a pair of hot pink slip on sketchers that I can honestly wear without being in too much pain. Its worth a try if you have never tried them. Enough on my shoes lol

    As for the morphine my gp was kind enough to give me morphine tablets and then because I felt they didn't work well enough oral morph on a repeat prescription. I am fairly lucky that whatever I have approached him with he lets me try. I am going to try B12 as suggested by Marz. Heck there isnt anything to loose by trying it. If it works and or helps then I owe him everything because I have tried so many things!

    Anyway thank so much for writing its nice to know that I am not the only one who has to go through this everyday. I hope we can keep in touch and share our woes of our PN. Personally I wish there wasn't any of us who had to endure the pain we do, its not fair. I live in hope that we will have a pain free world one day :)

  • Hi, Pammy. I gather you are in the UK. (I am in the US). I have had peripheral neuropathy for 30 years, although it doesn't seem to be any where near as bad as yours. Mine is also non-diabetic. The problem is, I did develop very mild, very well-controlled type II diabetes about 12 years ago. That was OK in the North, my doctors up there knew it wasn't diabetic neuropathy, but then I retired and moved to a small town in the South and they just jumped to the conclusion that it is diabetic neuropathy. When I pointed out to my new, small-town doctor that I had it for nearly 20 years before the diabetes, he just snickered and said "Oh, you probably had diabetes all along and didn't know it." It isn't as bad as yours, and I get by on a lot less medication than you do, but I would really love to have a diagnosis as to WHY I have this, and it is infuriating to be so casually dismissed. It is probably familial, like yours, because my brother also has it, and he is 75 and has never in his life had even a hint of diabetes. It is definitely progressive. It has gotten worse over the years. It began with just numbness for 10 years or so, then progressed to the shooting pains you describe, and now has become the "pins and needles" sort of pain in my feet and lower legs. The numbness is now beginning in my right hand, and I can no longer feel two of my fingertips on that hand.

  • Oh sweetie I am so sorry you have this horrible PN! As someone commented on another post, NP Sucks! I first started having problems when my mother was alive and she was the one who explained the Tree of men in the family who had NP. From my mothers grandfather, her father, his brothers x 2, her brother and me! So all the men on my mothers side and myself all have or have had PN my uncle is the only male from my mothers side that is still here. He is 78 and myself I am 54. We are the last of the line so far. Sadly behind my back my son 24 has had a nerve conduction study. In my case that was the first step of exams to see what it was that I was suffering from. We dont know the outcome as he is waiting for an appointment with the neurologist. Fingers crossed and prayers that he is not carrying the gene. It would break my heart if he were to have this. He is active fit and healthy otherwise. So I don't know if that helps answer how it ran in my family in comparison to yours. Its interesting that someone has something that is similar to my families illness running in the family. Funny my right hand is worse than my left, I am right handed. Every finger has some loss of feeling and when at rest I have a burning sensation sadly this is on both hands. I have hypersensitivity in both hands and feet. See previous comments about shoes, you might get a laugh about that! Anyway thanks for getting in touch hope to hear from you again Take care and have a pain free day! <3

  • 😡😡😡😡😡

    ⚽️

    Supposed to be in reply to Judmilla. Daft

  • Yes, I agree, Pammy should get her B12 and thyroid checked. I don't think mine is thyroid, but I can't get the complete testing. The GP just says my TSH is normal, and refuses to do any further testing. and besides, Medicare won't pay for it if it isn't "indicated". As for the B12, I have ruled that out. It was difficult, as here in the US, a "normal" level is defined as 200 or above. I am at extreme risk for a B12 deficiency as I've had an esophagectomy, which involves also removing the upper part of the stomach. I had many symptoms consistent with a B12 deficiency. My level came back as 520, so GP insisted it was "high" and I didn't need to worry. I had to inform him that the deficiency level in the rest of the world is 500, and even here, the books all say, "senior citizens may develop deficiency symptoms at levels of 500". Hey, if symptoms develop, then it's a deficiency. He reluctantly ordered the shots, but Medicare won't pay for it for levels above 200, so I had to pay for it out of pocket and have my husband administer the shots. A year of monthly shots brought my level up to 1,000, and some of my symptoms disappeared, but not the neuropathy. Then I switched to 2,500 microgram sublingual B12 tablets, and they brought the level up to over 2,000, after another year. He said that was "too high", so I took the tabs every other day for 3 months, and my level dropped to 1,000 again. So I'm back to taking them every day, and to H#[[ with his opinion. Even with a level of 2,000, my neuropathy continues to get worse, but it is very gradual.

  • Yes Pammy we need to keep in touch. I am from the US northeastern part of the country. I have tried the B-12. Didn't work for me but it's worth a try. Take care. Will talk to you later and it's nice to meet a new friend.

  • Always nice to meet a new friend :) I have a couple friends in Upper New York, have no idea where Upper is lol I will find out! Hehe! Visit soon x

  • Hi Pammy you are too funny about the upper New York. You made me laugh. I am in the same general area as New York. We are both in the Northeast. I am 61 years old and married. My husband has diabetes but no neuropathy. I have the neuropathy in my legs, feet, and hands. I drop alot of stuff. But what can you do. I know there are people out there with much worse illnesses. So I am grateful I can see, hear, and walk a little. Take care. Bethany

  • Which B12 were you taking ? How much ? Injections ? Nerve damage can take a long time to repair - as I know to my cost. Mine was too seriously damaged before I started the injections - but I feel there is progress being made after 3 years. B12 also works with B9 in the body so it is suggested a good B complex needs to be taken to go along with the B12.

  • Hi

    Just a word of caution. If people take B12 or any supplement before testing, the result will be skewed. I asked my Rheumy who said mine was 246 ( I had sneaked it on to a blood request form for other stuff) she said it was fine and rebuffed my protest. It wasnt the best to ask for I later found out.

    I am now being investigated for Coeliacs. In coeliacs nothing is absorbed, hence my weight loss, anaemia, Vit D deficit, headaches, NP, vit B12, with all the stomach stuff. Just a thought. There are so many cross over symptoms in these, mostly, autoimmune disorders. I have 5, CD will be 6!

    Hey ho. Just get a diagnosis first. Read up on the best blood test to order for your symptoms.

    Wishing you well

    ⚽️

  • Hi - yes I am aware of the skewed results from testing when supplementing. I post almost everyday on the topic on TUK :-)

    Hope you manage to heal your gut and find wellness :-) It can be a long journey .....

  • I wrote a huge long comment, and then accidentally clicked off the site without officially submitting it, and it disappeared. Oh, well, another time maybe. Take care. It is good to find people to talk to about this.

  • Hi there VintagePammy welcome to the forum. You have arrived at the right place & I'm sure you will love it as we all do ☺

    Wow thats some medication you are on there gal...I have Fibro & Arthritis & a lot of nerve damage which causes all the stabbing pains & like you, my fingers & hands, wrists give me hell.

    I take Pregablin which I think are similar to the gabapentin, then I take amitriptyline, quinine sulphate, 30/500 solpadol..I do sometimes take tramadol (not at same time though). Like you, I'm in constant pain and I have found out more about Fibro on here than I've learned in the 30 yrs I've had it.

    DWP are worse than traffic wardens (sorry for any offence) lol..but they have been given control & they are so full of their own importance, they think they are above everyone & they do and say what they want to, there is no one else in room, so they get away with treating ppl. Like this.

    A lot of ppl. Now are taping the interviews & taking someone with them.

    Anyway my friend, I hope you have a good a day as you can & I'm sure we will talk again soon.

    Peace, luv n light

    Jan x

  • Pammy , I totally understand what you're going through . This way of life really is very difficult and depressing . I understand your constant pain. Most people don't have a clue what we go through ,, they think it's in our heads ,

You may also like...