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Pain relief for Pernicious Anemia numbness etc.

RisingOne profile image
11 Replies

Hello everyone, this is my 2nd question on this most helpful site!

My question is as follows, I’am self-injecting B12, subcutaneous, weekly, I still get the numbness in my hands and tingling, it is improving I’ am just very impatient (been injecting since Nov. 8, 2020.

Is there any pain medication that could help, with the pain, numbness, cramping? Dr. has given me prescription for Gabapentin, Tramadol and Acetaminophen with Codeine (both opioids which I don’t take).

I know with Pernicious Anemia, I should avoid NASIDS and other pain meds.

Any help would be greatly appreciated.

Once again thanking you all in advance for your all your help.

Sincerely,

RisingOne

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11 Replies
Nackapan profile image
Nackapan

The stress on the body in pain is also detrimental.

I tried all sorts in the early days.

Needs must at times.

Some do get relief from different drugs used short term.

Opiates are one of this group.

Are addictive.

Good fot acute phases or used to get some sleep at night.

If you need something try it .

Then stop.

I avoided an antidepressant used for nerve pain as mine more head pain.

One of the many offered wax

Duloxetine.

An ex member on here swore by gaberpentin

We are all different .

This is where trial snd error comes in.

Haveyou tried upping b12 for a trial period??

Recently j had a nasty virus with s high temp for a few days.

Strangely felt like a bit of s holiday from ongoing pain as took pain killers regularly for s few days. .

Sometimes use paracetamol to be in thd 'background'

Never used much st all in the past. It could ho out of date in a drawer.

How times change.

Anything yk try and 'get on .

My mum pops pills of all sorts . Never questions!

She's 92

They have their place.

If you inding it difficult

Jillymo profile image
Jillymo

I was also prescribed Gabapentine but it made me so sleepy I simply could not tolerate it. I am also self injecting and things are slowly improving but as soon as I try to space my injections out to less frequency symptoms return.

Are you supplementing with any other vits such as magnesium , folate, vit D, B6? I were suffering the most dreadful cramping which has now improved.

Tonic water is also supposed to help with cramping but I personally cant stand the stuff. My legs and feet were seriously numb but improved with more frequency of injections.

I hope you find some releif soon especially with the cramp which can be excuciatingly painful, I am sure other's will advise.

Best wishes

cocoa profile image
cocoa

Gabapentin did not work for me. I was told not to stop taking it suddenly, so weaning off was difficult. Now I am cautious and prefer to do exercises advised by physio for core strength.

I do not take anything other than paracetamol.

Narwhal10 profile image
Narwhal10

Hi RisingOne,

Years ago I was prescribed amitriptyline (which knocked me out so I only use when I have facial nerve pain after dentist or temperature is freezing).

Plus, like most opioids, they can cause constipation. I had a very late diagnosis of coeliac disease so no thanks.

I can’t see if you are in the U.K. but for me

Alpha Lipoic Acid

ebay.co.uk/itm/174608762962 really helps.

Have a read about it - literature is usually on diabetic neuropathy.

For info: I’ve had Raynaurds since aged 12, painful feet since mid 20s (I didn’t know any different). The supplements are pricey but they are gluten, lactose etc etc free. But my walk and pain has changed notably.

All the best

RisingOne profile image
RisingOne in reply toNarwhal10

Thanks Narehal10 for the info I just started with the Alpha Lipoic Acid.

Lunario profile image
Lunario

Like Nackapan, I would suggest more frequent injections, at least for a while. The nerves can take a long time to heal, and finding the right frequency is a matter of trial and error. After a year of back and forth, I have found that I need injections 3 times a week. This is very individualized.

Alpha Lipoic acid is also very helpful. It works the best together with benfotiamine (vitamin B1). There are different forms of Alpha Lipoic acid. R-Alpha-Lipoic acid is the natural, more active form of lipoic acid. It is the only form that exists in nature and is produced in the body. Another helpful substance is N-Acetyl Cysteine, (also known as NAC for short). It supports healthy levels of glutathione.

sciencedirect.com/science/a...

Narwhal10 profile image
Narwhal10 in reply toLunario

Wow, thanks

Rexz profile image
Rexz

I too, was given Gabapentin but it did me little good. I offer that your issue could be a sensitivity to food. Most likely not "intolerant" but sensitive. When you have sensitivities to food...soon after you eat that food your Mast Cells, there are trillions of them all over your body, in your digestive tract, in skin everywhere will all fire histamine. Many of these Mast Cells are just adjacent to your nerves and when you have nerve damage such as may be the case with PA then when histamine fires that nerve will transmit pain. I found I had been sensitive to gluten all my life just never knew it until my nerve damage. I stopped eating gluten and dairy and although the numbness and tingling did not diminish the pain stopped immediately. I also stopped the Gabapentin. I am not at all certain this is the issue that you are dealing with but is quite easy to try, although a little tedious. Keep a detail of everything, I mean everything, you put into your mouth including supplements...make sure you read the supplement as they can also contain gluten, rice, soy etc. Then log your symptoms who know, you may find something you would have never guessed. I discovered this through some leading edge testing and treatment at Loma Linda University Hospital here in US.

Hope this helps and wishing you luck, Rex

RisingOne profile image
RisingOne in reply toRexz

Thank You Rexz for this information, I truly appreciate you taking the time to respond to my question.

SouthSounder profile image
SouthSounder

While they can cause stomach issues for some people (PA or not) , I'm not aware that NSAIDS are specifically problematic for people with PA. Aspirin, an NSAID, is especially know for gut issues. I take 200mg (a relatively low dose) of ibuprofen occasionally for aches/pains, and also find it helps the sinus congestion which flares during pollen season (like now, where I live). I think some find naproxen a bit easier on the gut. I always like to begin with about half the "recommended" dose of a drug, and go from there.

in reply toSouthSounder

Some may find naproxen easier on the gut, but a few years ago after taking naproxen for arthritis for a while. I became very anaemic as in 'come in now for a blood transfusion'. Every doctor i spoke to sucked their teeth and said naproxen is great for inflamation, but terrible for the gut. I am not allowed it now since they found gastritis in an endoscopy, despite not actually being able to identify it specifically as the cause.

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