Neuropathy

[Birdlady1]

I have severe disc degeration and have had two surgeries, I have been left with numbness in saddle area and patches on feet. I am really suffering from awful burning neuropathy in my legs and some in my arms....I take gabapentin but getting no relief yet.....Is anyone else in my position and please can you help?

[Hidden]

Hi there, welcome aboard, sorry to hear that you are in pain, you say you have had surgery twice , top or bottom of the spine , also pregabilin is good for nerve pain.

[Birdlady1 in reply to Hidden]

Thank you for replying. My first surgery on spine was just a decompression on L4/5 , my second was as double decompression / lamomectomy on L4/5 /S1......I also had a knee replacement 9 years ago tat was unsuccessful because they damaged the soft tissue and it has given me a lot of pain ever since... My other knee has needed going for several years, but for obvious reasons I keep putting it off.........I only started the Pregabalin just over a week ago, so not up to a full dose yet.

I also have been on co codamol for many years, and yes I take sleeping tablets or I would never get any sleep........Am waiting to have another epidural, and sometimes they help , sometimes not.....thank you

[Ritchie1268]

Hi, sorry you're struggling.

This may or may not be of any help, but I've had DDD in 5 discs in my back & 2 in my neck for years now.

Have you been taking any painkillers for the DDD? The reason I ask, is I was on OxyContin for mine for a few years. Now off it, I was diagnosed with vitamin B12 deficiency & Pernicious Anemia, caused by high dose Oxy over a long time.

I used to get pins & needles in my fingers & tingling burning feet. After my feet became painful when walking, I was referred to a Neurologist who diagnosed small fibre neuropathy. Due to the B12D I have damaged nerves in my feet. She said to carry on with the B12 Injections & the nerve damage may start to heal but it will time time.

Hope you find the answers.

[SecretlyDisabled7]

I don't think I get relief from it either and I take 1200 mg three times a day, just in case it does help. But it hasn't helped my dog, my friends, or anyone I know. It must help someone or they wouldn't use it. It is supposed to work. But it must depend on the person's chemistry. Good luck. I always hope other people find relief because I don't want anyone to suffer.

[Birdlady1 in reply to SecretlyDisabled7]

My husband has spinal stenosis and is on 900 a day and it dose seem to have helped him......Today I will be on 700 working my way up......will let you know if I get any relief....but not holding my breath!

[SecretlyDisabled7 in reply to Birdlady1]

I would like to hear how it works. Thank you for keeping us all up to date on the info.

[Birdlady1]

Hello Ritchie, and thank you for your reply....I have been taking cocodamol 30/500 for many years. .I have tried lots of other meds....butrans patches , tramadol for example and nothing helps...... The specialist has said I have also got damage further up in the c spine, hence the pins and needles in my arms and and hands.........Then pain , since my last op in my right foot is indescribable, except to someone like you of course.....

From my last X-ray it appears that the nerves in my lower back are only just able to squeeze through as they as to compressed, and the surguen has said he can only operate if it becomes an emergency.....bladder and Bowles effected!.,......So yes I am extremely fed up....but thank you for listening.....

[obriants in reply to Birdlady1]

Do you maybe have spinal arachnoiditis? It affects the bladder and bowels, horrible pain goes down the legs. I hate to even mention this but my daughter is dealing with it. She is only in her 40’s. She has it from the lumbar area down.

[Birdlady1 in reply to obriants]

Sometimes I get shooting pains there and aching, but I haven't been diagnosed with arachnoiditis, but I am scared I am heading that way.

I wish we could put our xray photos on here.....mine is a complete mess, but clearly shows the damage in my spine.......

[susano69]

Hi Everybody, i am new to the group, but i have read what you are all going through, i am going through a lot of the same, i have got 7 prolapse disc and Stenosis of my Cervical spine, i take Gabapentin, M.S.T's, Oramorph, Amitriptyline, Diazepam, i have had MRI Scans, C.T scans, and the Spinal doctor sent me to pain management, they put me under a Psychologist for months, but finally i got to see another Spinal which asked for more scans to be done, i have had them done, and i need an operation on my cervical spine because it is in a bad way, i get electric shocks down my arms into my fingers , i cant lay down for more than an hour else i cant move and have to be lifted up, but now it as come to having a operation i am so scared , Could i ask what You would do?? i have until the 25th September, i have ask about injections but he as told me they are not going to help the problem because it is very bad now, I wish you all the Luck in the World because i no exactly what you are going through, i was 50 in June, My nana is 99 and she can walk better than me 🙈 any advise would be greatly appreciated

[Flutterbyca in reply to susano69]

Gosh. Difficult decision. I wouldn’t get back surgery. In my case I have so much arthritis it probably wouldn’t help. Have three crushed disks. Stenosis. Crushed tailbone. Etc etc. from what I’ve read I’d be careful. But you’re only 50. Somehow I am now 71!!! You might want to try it since you’re young. Find out if you have arthritis in your back. That can cause pain and I don’t believe there is a cure. Good luck and keep us posted on how you’re doing

[Flutterbyca in reply to susano69]

By the way, you were born the year I was married !😃

[Birdlady1]

Hello Susan welcome to to group of people / friends who really do understand your pain.......You say you have been offered an operation.......have they told you what would happen if you decide NOT to have it? Will you just stay the same? In dreadful pain, or could things get much worse for you......I can really understand how scared you must be feeling, but they wouldn’t want to operate if it wasn’t entirely safe......

I have had two lumber spine surgeries and can tell you although not pleasant , you shouldn’t be afraid. It’s scary I know, but think about it......

Do you want to stay as you are or put your faith in the specialists and hopefully have a much better life.... You are on a lot of drugs just as I am, and like you I am not getting much if any benefit. No operation for me, far to dangerous......but if my lovely specialist could offer me one with a little bit of improvement.....I would have it.......

[Flutterbyca]

So sorry to hear about your neuropathy. I have similar situation. Frequently throughout the day I lay on the floor because can’t sit in chairs and place my feet on a heating pad on very low heat and it seems to help. I have to do this several times a day. But, don’t do this if your feet are numb. Good luck

[Birdlady1]

That’s really interesting flutterbyca, can I ask where your neuropathy is?.....mine mainly affects my lower legs especially around my shins. But I also get some in my wrists and arms from my C spine......

[Flutterbyca]

I take Horizant and Gabapentin and it helps. Horizant can cause tingling so have to weigh the benefits

[Flutterbyca]

Neuropathy in both feet and halfway up my legs. So much fun !!!!!

[Flutterbyca]

I have neuropathy in both feet and half way up both legs. Good luck

[Flutterbyca]

Do u see my reply Birdlady1 ?

[Birdlady1 in reply to Flutterbyca]

Hi Flutterbyca , I think maybe I am a lot older than you I am in my 70 s.

Are you in England? We seem to have similar health conditions though.

I haven't found any painkillers yet that help.....doctor is going to increase my gabapentin, I have just got to the 900 a day day dose and know I can go much higher.......Totally worn out with all the pain as you must be.......please keep in touch with me it really helps to talk to someone that understands....

[Birdlady1 in reply to Flutterbyca]

Sorry I have just seen that you live in America .......a shame I would like to have talked to you more often......

[Flutterbyca]

We can talk as much as you want. Even though we’re far away we can be here for each other. The Horizant I take is time released and I take Gabapentin as well. Together it’s about 1200 mg. It makes me a little sick in the mornings. I take Lunesta and tizanidine before sleep. I was sleeping just two hours a night. Doctor said sleep is so important so increased my medication. Now I sleep 5 to 7 sometimes 9 hours a night. I would sleep longer but I like to be up on my deck to hear the owls and then wait for the sunrise. I see coyotes almost every day. Lots of birds. Saw a Lynx one day. We have lots of bears and a mountain lion in the area but I haven’t seen one close up yet I planted fruit trees so I could see deer 🤪 but haven’t seen any. Also taking iron. B 12 and D3. I was tested and am low in these vitamins. I am 72 years old this November. I live in Lake Arrowhead and travel to Los Angeles to see children and grand children every week or so. I have had epidural injections to my back so easier to travel. Did I say ? 3 crushed discs in back. Fractured tailbone and all the joys that come with it 😃. I think maybe you should ask doc to add horizant to help with pain. You have to get used to it. Send me another message if you have questions. We have to be warriors in this fight. Don’t we? Take care.