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Sjogrens Topics => Living With Sjogren's => Topic started by: Cassi307 on September 02, 2018, 06:04:28 AM

Title: Neuropathy alternative treatments
Post by: Cassi307 on September 02, 2018, 06:04:28 AM
 It is really miserable when you can’t tell which medical issue is causing which symptom!  I have been struggling with severe pain after hurting my back five months ago and found out that I have  degenerative disc disease and that my L4 and L5 for pressing on the nerve. There is no in network pain management doctor in my area so I have been trying to do things on my own and I’m starting acupuncture. Crazy symptoms keep popping up and I think I’m having many flares on and off and I think it may be caused by the constant pain I’m going through.   I am so fatigued and achy all the time.  Very stressful.
 I have been getting a tingling sensation in my lower leg down into my foot and especially my big toe which is quite painful.  Feels like part of the bottom of my toe has no feeling.  My last nerve testing several months ago showed peripheral neuropathy but at the time I didn’t think I was having any symptoms but how was I able to tell considering the pain I was experiencing down my leg from my spine. Now I  wonder if it is peripheral neuropathy?  I was on gabapentin a long time ago and had terrible side effects and couldn’t take it. Because of my advanced stage kidney disease several other medications were not an option. I am desperate to find a solution to this nerve pain not only in my back but in my foot.
 I read B vitamins and ALA were an option.  I also read magnesium chloride is a potential help. Can anyone give me any other natural remedies I can try?
Title: Re: Neuropathy alternative treatments
Post by: irish on September 02, 2018, 08:50:48 PM
Did you have any MRIs of your spine to see if you are having any spinal compression. I ask this because I had so much back pain and other pain over a 3 year period. Finally I had MRIs of cervical spine and lumbar spine. Turned out I had compression of C4C5 and I had no pain in my neck nor did I have any headaches. The spine can be hard to figure out and if you are not having luck getting the doctors to check more in depth you may want to get a second opinion.

The back is notoriously complicated and doctors do not rush into doing anything too invasive. However, we have to keep on our toes so that we don't get permanent damage. Do not panic but keep abreast of your pains. I had thought I was having neuroopathy in my arms and low and behold I needed to have a spinal fusion in my neck. Things just continue to surprise those of us with autoimmune and we have to be aware that not all of our ailments are caused by the autoimmune issues. Good luck. Irish
Title: Re: Neuropathy alternative treatments
Post by: Cassi307 on September 03, 2018, 06:39:33 AM
 Thank you for your reply Irish. Yes I did have an MRI and that’s how I know my L4 and L5 are pressing on to a nerve.  I also have spinal stenosis and a bulging disc in my lumbar area on my lumbar just sorry affected in someway.  They gave me a diagnosis of degenerative disc disease. Lucky me also has osteoporosis also. I have improved since February. In the beginning I can barely take a few steps without having to stop now I can go up to approximately 20 feet without having to stop. But the pain is always there. Sometimes I will sit up for hours at night rocking myself until I’m tired enough to sleep. There is no network pain specialist near me. I cannot afford  to go out of network.  I even had nerve conduction test which diagnose the peripheral neuropathy.  I saw an orthopedic spine Doctor Who said I didn’t need surgery and I should just do pain management but that puts me back to the point where there is no in network in my area Dr. to help me.  I am not physically able to stand on a street corner and wait for a bus and then take trains to get to where I need to be so I can’t travel to see anyone. My son went back to school out-of-state so I have no one to drive me.
 I am hoping as a last resort that acupuncture will help me.
Title: Re: Neuropathy alternative treatments
Post by: Skylar on September 03, 2018, 08:43:09 AM
I'm sorry your struggling with this.

I've found that diet is critical. When I eat properly I can reduce my swelling and inflammation - and when they are reduced I have little to know pain. The damage to my body is permanent - it's not changing so diet for me is so important.

I follow Dr. John McDougall's diet - he has a website with all the information and a forum to help people. He recommends that people with autoimmune disease (AI) and similar diseases start with the Elimination Diet (and avoid all gluten unless you know gluten doesn't cause problems) which you can put into the search function on the website and find. There are lots of people with AI diseases on that site who have had great success with his diet. Doing the elimination diet will help you find which foods cause inflammation and problems in your body.

This diet doesn't cure AID, rather it puts most illnesses into remission and reduces inflammation and swelling so you can function normally pain free. As I said, when I cheat and eat foods I shouldn't - I pay the price. The McDougall diet is probably the cheapest way to eat - so very cost effective. You can use chronometer food tracker to be assured you are getting all the nutrients required by the USDA Dietary Reference Intakes. I will warn you if you do follow this diet strictly as I do, you will need to have your doctor follow you at the beginning because you will need to be taking off some medication. If you have high blood pressure - your blood pressure will drop to normal - so you'll need your doctor to monitor and tell you to stop taking blood pressure medication . You might not need cholesterol lowering drugs either when you eat this way. Type 2 diabetics usually see their diabetes goes into remission and those with Type 1 will find they need to reduce insulin although they will always need insulin. There are several pills I haven't taken in 10 years since changing my diet. OTOH I still need my thyroid medication.

As for neuropathy - I still have it - when my neurologist tests me, it's still there. I also still have to be careful to check my feet because if I step on something sharp and cut myself I don't feel it. But I have no pain. Nor do I have pain from my arthritis and disc problems in my neck.
Title: Re: Neuropathy alternative treatments
Post by: Cassi307 on September 03, 2018, 09:48:33 PM
 Thank you for your information I am already on a very restricted diet because of advanced kidney disease.  I am happy to hear that your approach has helped your pain.  Joe reminded me to breathe and meditate which is something I used to do  but got away from.  Right now I am all set up in bed with pillows in strategic places and I’m going to ask Alexa to play some Ocean Sounds and I’m going to do my deep breathing. That will be a whole lot better than sitting up for the next few hours trying to rock myself to sleep in my rocking chair.  Sometimes listening to someone else’s experience helps us find what we need to get through the rough times.
 I hope things continue to go well for you.
Title: Re: Neuropathy alternative treatments
Post by: SjoGirl on September 04, 2018, 09:48:07 AM
Cassi, first I am sorry as this is miserable, second I say so because I have felt that pain. I have DDD up and down my spine, maybe even ankloysising spondylitis (as per my last visit with my rheumy). A few thoughts:

1. There are some very good books about neuropathy. Unfortunately it is not well understood as to causes or treatments beyond treating symptoms. I do know that there is a difference between small and large fibre and it seems to matter which is the problem.

2. I take Gabapentin, but not much because it gives me night tremors if I am on larger doses (large for me isn't much, but I'm tiny).

3. Meditation and positive self talk. I keep reading more and more which suggests that calming the self helps calm the nervous system. I can say that I went to bed with an excruciating back ache the other night, spasms included.

I was really disgusted because I just upped a med based on my rhuemy's recommendation and thought oh great, here's the outcome. I then decided to breath more slowly, to nicely tell my back to relax, well darn if after a while it didn't do just that. I was thrilled and plan to try this again.

Wishing you some relief even if only for a short while.
Title: Re: Neuropathy alternative treatments
Post by: Cassi307 on September 06, 2018, 08:56:03 AM
Thanks Sjogirl!