What happened to my LIFE ???

[Welsey]

Do any of you have this very depressing problem ? Because of my PN I'm always in pain. I do take medication and I seem to feel better it night . So, I think about all the wonderful things I plan on doing the NEXT DAY .

Wonderful places I will go . Places to have lunch ,. Go to the neighborhood vegetable garden . I write down all the things I will do . Very excited ,,,

The morning comes ,,,, I'm in to much pain to even get dressed and get out .

It makes me feel very depressed ',,,,, does anyone experience this ?

Thank you

[DonnaG]

I can so relate Welsey, when my PN first started it keep me up all night with the creepy crawly feeling. I would have to get up and walk around. Now that it is several years later and the PN has progressed, and I have much more numbness, that involves the both entire feet. First it was just the bottom now the top of the feet are numb as well, no feeling in my toes and the plantar fascia feels like a piece of wet leather...lol so tight and weird, feels like I have socks on at all times, but the weird thing is I can't stand to have socks on my feet. I of course take Nortriptyline to sleep and just started the synthetic form of MJ Nabilone. we will see how that goes, but the morning now is my worst time. I wake up in such burning pain, I have to get out of the bed the minute my eyes open and my brain sends its message to the feet , takes a second or so , day in day out my mornings start like this. Pain is not the best thing to wake up to every day , that is for sure. I take my pain meds, sit for an hour or more until it subsides then I try to get on with my day. My goal is to get one thing done every day and pat myself on the back for doing it. I would never be able to explain to someone what an accomplishment just doing the laundry can be. In pain management I learned to PACE my self and try not to push my self to the point of major flare. Although those can come out of nowhere sometimes. I started Tai Chi and I find it really helps with my balance and gets me out of the house once a week. Trying to motivate my self to do it every day at home. I was never very good at following and exercise routine. But I really like Tai Chi and gentle aqua at the pool. But water exercise can flare you up as well. It is all about learning to live with this horrific chronic pain. I certainly am not the person I used to be. I miss her so much. I try every day to keep going and do something out of the house. Some days I just hang out on the couch , strange thing about this PN it will not let me lay down for any long period of time. Wow, listen to me, I am rambling on and on. Sorry about that. It does feel good to vent every once in awhile for sure and know that people understand.

Donna

[Welsey in reply to DonnaG]

Donna , you are not rambling on at all . I'm sorry you go through this chronic pain also. I finally stop feeling sorry when I had to cancel plans with people . Now , I don't even make plans .

I'm glad to know I'm not the only one that goes through this .

Yes, it's hard to go from constantly doing and doing to not going out for days ,

I understand you ,,, thank you and I will not try be so hard on myself .

[Marz in reply to Welsey]

Welsey - have replied above to Donna which I meant to send to you Am hoping the same information will be helpful .....

[Marz in reply to DonnaG]

Do you know your B12 levels - ?? Low B12 is a neurological condition and NOT a vitamin deficiency .... Have you read the book - Could it Be B12 ? - by Sally Pacholok ? Even if you have been tested - Docs will say you are Normal - when they mean in range. Anything under 500 can cause neurological damage. B12 protects the myelin sheath - the covering around the nerves - so when that degrades you will have the nerve pain.

b12deficiency.info/signs-an...

Scroll down for the signs and symptoms and read as much as you can on the above website. Do you have gut issues ?? - as B12 is only absorbed in one part of the small intestine - the Terminal Ileum. I do not have one so have suffered the serious consequences of LOW B12 and have weekly injections.

In the old days B12 Deficiency was referred to as - Socks and Gloves

[DonnaG in reply to Marz]

Hi Marz , yes I have had my B12 levels checked and as you said and mine were in the 500 range, but I read a lot about B12 and its affect on nerves and the myelin sheath. I take a sublingual form Methylcobalamin and I find it gives me energy and helps when I have a major flare. B12 is so important for all of us suffering with PN.

[Marz in reply to DonnaG]

So glad for you that you are on the case with your B12. Testing whilst supplementing does skew the result - but I expect you know that. Also only 20% of any result is available to be utilised at a cellular level where it is needed. I expect you know that B12 works with B9 or Folic Acid in the body. So taking a GOOD B Complex is advisable.

Are you taking the 5000 mcg sub -lingual ?

[DonnaG in reply to Marz]

Right now I am taking 1000 sub-lingual,I used to buy ones on line that were 5000 iu and it was great just one tablet. Now I just pop a few of the 1000 under my tongue.

What are your thoughts on the B6 contained in the B Complex, I have been reading up on B6 toxicity , so just stopped my B complex, I need to wade through all the info out there and make a decision, B complex or not for Peripheral Neuropathy. So much to learn.

On another train of thought I wanted to mention that back in 2007 I was given an RX for Ciprofloxacin, it is a fluoroquinolone that is used widely for UTI's and lung infections etc.. There are warnings with this class of antibiotics that they can cause tendon damage and peripheral neuropathy. On the third day of being on this drug, I had a total rupture of my achillies tendon and that is when all my troubles began. The beginning of the neuropathy. At the time we didn't connect the two, but a few years later after doing much research on my problems I came across the info on Fluoroquinolone antibiotics and their impact on Mitochondrial Dysfunction and Oxidative damage. At the same time we were doing some genetic testing and discovered I had a mutate gene SPTLC-1 that can cause PN. I often wonder what impact the Cipro had on this gene "awaken it" kind of thing. I really don't have the education to be getting into all of this too deeply, but I do know that there is some kind of connection to it all. There are thousand s of people out there with ruptured tendons who never connect their ruptures or tendon problems to the antibiotic they were given. Once again awareness and education is the key . There are many other disabling effects from taking this chemo therapy based antibiotic.

Here I go again, am starting to realize that my brain fog is starting to lift, I can actually write more than a paragraph. There have been times where my attention span is so limited and my ability to focus was terrible. I am surprised the past two days how much I have written on here. Interesting. Have cut back on my Lyrica.. that could be it....

Donna

[Marz in reply to DonnaG]

I wouldn't stop the B complex completely - just ensure you do not exceed the RDA. Jarrow Methylcobalamin B12 5000mcg lozenges are the most favoured on the Thyroid UK forum - from Amazon.

Which reminds me have you had your thyroid checked - as LOW thyroid can cause similar symptoms to Low B12 and PN. Fluoride based drugs can compromise the thyroid activity within the body - so check your toothpaste

Glad you are feeling stronger and able to focus for longer.

[DonnaG in reply to Marz]

Interesting that you should mention , I was just diagnosed in the past few months of Hypothyroid and started on a thyroid medication. All of these troubles just seem to blend into one another. I have started reading about magnesium , lots of interesting stuff there. I purchased some pure Magnesium oil (magnesium Chloride Brine) and put it on my legs and feet especially when I get major cramps in my toes and calves. It really helps with the cramps and the burning pain at times.

Hope every one has a pain free weekend. It is a beautiful sunny fall day here in Nova Scotia. I love this time of year.

Donna

[Welsey in reply to DonnaG]

Yes, have a good day , or weekend !

[Marz in reply to DonnaG]

Glad you have at least been diagnosed as being Hypo There are thousands and thousands of people who are struggling without a diagnosis due to the poor testing and even poorer understanding of the results. Your achilles rupture could well have been linked to your low thyroid too .....

There is an excellent Thyroid forum here on HealthUnlocked - ThyroidUK . I have been on that forum for over 4 years and there are over 44,000 of us sharing up to date news and views. So many well informed people that have helped me on my journey. Hope to see you there.

What dose are you on of T4 ? Did you have your Ferritin - Folate - VitD tested ? They all need to be optimal for your Thyroid meds to work well and for the conversion of T4 into the Active hormone T3, Do you have Hashimotos ?

Fab weather too here in Crete - the summer burn has gone out of the sun - and now we can enjoy those beautiful autumnal days

[Welsey in reply to Marz]

Marz ,,, I will check on that . Thank you !!!!!

[Marz in reply to Welsey]

Let me know your result. You are legally entitled to all results - after all it is YOUR blood 😊

Did you look at the website I posted above ?

[Welsey in reply to Marz]

I will, I'm just not feeling well right now . Now I have this conjunctive cyst in my eye , and it hurts . Sorry about all the down comments .

[Marz in reply to Welsey]

Hope you soon feel stronger

[Carla_Leinwander]

PN is a bitch, pardon my language. It can be agonizing. I was diagnosed 25 years ago when they wouldn't give people in chronic pain anything for the pain. You just had to suffer with it. I was diagnosed by Mayo Clinic in Minnesota who told me to go home and read the book of Job in the Bible, they didn't know why some people had to suffer. I am a Medical Technologist and had to work in a wheelchair because of the pain. I know what you are going through. Hang in there. Don't let the pain win. Stay as active as you can with the pain, that way you won't be as depressed hopefully. I have been to the point where I couldn't walk at all, but you have to keep going. Be strong.

[Welsey in reply to Carla_Leinwander]

OMG WHAT !!! Oh now that makes me so ANGRY !! They told you to go home and read the Book on Job ?? I'm not against the Bible but, what's that have to do with your chronic PAIN ?? OH MAN !!!

[Carla_Leinwander in reply to Welsey]

I was more angry at God than I was the doctors. I had a 3 year old and an 8 month old at the time they told me I would never have a normal life again. I could walk maybe 20-30 minutes a day, the pain was so intense. Would not wish that pain on anyone. So I took care of my babies on my hands and knees and I taught my 8 month old to crawl. I kept my job as a Medical Technologist using a motorized wheelchair. This summer I did the RAIN bicycle ride, a famous ride in Indiana, 160 miles, one way, one day. I suffered through pain, depression and anxiety, but never gave up. Exercise keeps me sane. If I didn't I would be in a bad spot. One of the problems with chronic pain that is so intense you tend to internalize, and forget how much your situation affects the people around you. They are suffering too, and are greatly affected by the situation also. I have hit bottom, but I didn't quit. Stay strong emotionally, and you can beat this thing. At least now I have doctors that will prescribe me pain meds, and I take them. Not to proud to do that.

[Welsey in reply to Carla_Leinwander]

You are a real insperation to me and my other . Thank you , I hope you still get better and better each day , you will be an inspiration to your children !

I must try harder ,, with the pain I can't even get ready to go to yoga ,, I must try harder . Thank you for story .

[Carla_Leinwander in reply to Welsey]

Wesley, remember I have had 27 years of this. I have been where you are at. I was in too much pain to get ready for work, so I crawled to get ready, and my husband drove me to the hospital and my biggest hope was that there would be a decent wheelchair at the front doors that I could work in. Spent 5 years in the wheelchair, and a group from the fitness center in the hospital heard about me and literally dragged me up there. I was too weak to walk from machine to machine, but I got stronger. My dream was always to run marathons, to compete, so they put me on a bicycle and that was all it took. It was the window to my world. I saw trees, flowers, the sky!! I started living again. Have ridden all over the United States and Canada. Have competed in trialalons and duathalons. But after my second husband and I got married, I had a severe relapse. And I quit. I gave up. Spent another five years just going to doctors. I finally decided enough was enough. If I was going to hurt on the couch I could hurt on the bike, and started riding again. Treated myself to a new bike last year. Do I moderate? No. Do I push past the limits? Yes. But that is my choice. I won't let the pain rule my life any more. It has taken enough of it as it is. So if my story helps you in any way, I am so glad. God does put people in our life for a reason, I truly believe that, and I don't hate Him anymore for my suffering. But remember, Wesley, 27 years. Just hang in there, just do the very best you can every day, and keep living. Never give up, no matter how hopeless it feels at the moment. Best wishes to you and your family!

[Welsey in reply to Carla_Leinwander]

Carla , thank you so much for your story ,, you have helped me to try and try more . I think it will help me . Hope you're well... Keep well.

[Carla_Leinwander in reply to Welsey]

Wesley, you are welcome, but you don't have to thank me. No matter how bad it becomes, or how hopeless the pain feels, stay strong and don't let it win. Chronic pain can take over your life. My favorite coffee mug shows some cartoon cyclists on it and it says "quitting is not an option". Words to live by!! You, also, keep well and do the best you can. That is all anyone can ask of themselves.

[Mmenergy in reply to Carla_Leinwander]

I am new to this site and I could tell right now I will like it. Vent, share, listen, that's what I need to do. I think about my life now ( 3 years) with chronic pain and try to tell myself that things could be worst. Thankfully I could lay around and not take care of children or hold a job; did that already. So anyone with those responsibilities, my heart goes out to you. I am grateful for the good life I had as a productive, healthy, energetic mother, wife and artist. Don't get me wrong, I'm still grateful especially because I live in a beautiful setting, have great doctors at Columbia Neurology Institute in NYC and an understanding husband. I am presently taking cymbalta, tramadol,and zolpidem. I have a rare condition called CANVAS which is an acronym for: Cerebellar ataxia, Neuropathy, Vestibular areflexia syndrome.

[Chatterer]

Gosh, reading this makes me realise how lucky I am. I'm only a couple of years in to my diagnosis so my symptoms aren't as bad as some described above, but I recognise the depression aspect. I particularly like DonnaG's comments about pacing myself and I'll look into local TaiChi classes. I did it years ago and enjoyed it as the teacher didn't emphasise the martial arts aspect of the movements - only the stillness and balance.

Welsley, your reply to Donna's comment about moving from 'doing' reminds me of a cartoon. The punchline was that we have to learn to be a 'human being', rather than a 'human doing'.

[DonnaG in reply to Chatterer]

Hi Chatterer I also have a DVD that I can follow to do my Tai Chi at home, it is a great DVD it says Tai Chi for Arthritis but my physic therapist recommended this for my PN to help with balance. It can also be done from a chair

There are lots of you tube videos of Dr Paul Lam instruction , that I watched first then I ordered the DVD.

[Chatterer in reply to DonnaG]

Thanks Donna, I'll check out the DVD you mention.

[Welsey in reply to Chatterer]

Yes, that does make a lot of sense . Thank you . We are Humans !!! Not Humans doing ! Thank you , I love thAt !

[monbroon60]

i used to do this but im 15 years down the line now in wheelchair only go out for hospital appointments you just have to think 2moz is new day and hope for best i no pain is unbearable at times x

[Welsey]

Oh I'm so very sorry to hear this ,,, dumb question but do you have any hobbies ? Do you enjoy reading , Tv ???

[43-19gummy73]

Hello, you are a very strong person, everyone who suffers constant setbacks to their optimism and positivity is a huge plus to your human spirit and your survival instinct but their must be some light glimmering at the end of this dim tunnel and I always BELIEVE their is, and at times information comes our way that may help, I am NOT talking about quack medicine but the results of real research where millions and million of dollars / pounds have been and is being spent to find answers to this and similar disorders. I have now been suffering DPN for around 3 years , the pain I would not give a dog, the disability overall is ............I think we know the challenge this condition that effects us, constantly, our daily lives and the fortitude we have to muster to continue with an existence that cannot be considered favourable far from it ( mild description ). However, I had been following a line of research, mainly in the USA, the richest country in the world who spend far more money than most other country's in their search for answers . What had inspired and encouraged me is the results they have got with VITAMIN D3 where the pain of PN was reducing beyond the current treatment with psychoactive drugs ( these drugs carry their own downside and awful side effects) however the placebo tests using large numbers of people , those given vit' D3 where coming out with positive results, a reduction in pain and smiles............SMILES. All this info' is available on the net, check it out for yourself !!!! It is considered that if you can get a level of D3 in your blood equalling between 80 to 100 m/mg per ml then the effects on pain reduction is being observed it appears also that it seems that there is some improvement in glycaemic control, more studies ongoing . So I take daily now 10,000 iu of Vitamin D3 pd and , for me, a reduction in pain was noticed within three days........................I feel this was real and not imagined or fanciful , OK not a cure but the reduction is significant and desirable and no side effects......just smiles and a feeling of coming home to your real, responsive self, and life. When this was happening to me , smiles, engaging with others, expansive, happy, talkative EBULLIENT then sadly , other well informed people...........NOT, thought they where looking at hypomania and a consultation with a psychiatrist..............I come out of that smelling of roses. Anyway that is my short storey, if you like it try it VITAMIN D3...................don't wait. Want it ??

[Marz in reply to 43-19gummy73]

I too take 10,000 iu"s of D3 daily too. I have Hashimotos and Crohns. I have read that as VitD is fat soluble it is advisable to take it with a main meal containing good fats.

Also as D improves the uptake of calcium from foods it is important to also take VitK2 MK7 which directs calcium away from the arteries and into the bones and teeth.

Best to have calcium levels checked too.

Low thyroid can also cause PN along with low B12. Hope your levels are good.

Am not a medic - just a Hashimotos sufferer with a B12 issue. 😊

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Every day

[bobdog100]

here we go again , i was diagnosed with p/n my first doc told me had verrucas, then i met a real doc who said i was suffering from the dreaded p/n, being woken during the night with the burning electric eel in the sole of my foot. but over the years i have been self diagnosing my complaint and have discovered that my p/n is brought on by the following

if i have any food/ sauce that contains WHITE SPIRIT VINEGAR, or GARLIC i am 100% certain to be woken mid morning by the cursed pain in the sole of my feet .

and so i avoid these like the plague, unfortunately i can be caught out as yesterday gorging on turkey and stuffing was awakened by you no what, but realized the next day that the stuffing contained garlic puree. so i will give the stuffing a miss next Xmas.

i am also taking a b/ complex pill every day as i am told it helps i do sympathies with those who have real difficulties much worse than mine, most doctors haven't a clue about p/n which i find so disappointing but as i have found in my case diet had a lot to do with it.