Hello everyone,
It's been a long time since I posted a question.
I am increasingly concerned about the growing loss of feeling in my feet and now it's halfway up to my knees. It isn't painful, just uncomfortable. When I sit my feet are cold. In fact, they are almost always cold. I avoid going into a jacuzzi because of the pins and needles.
How bad will this get?
What is the treatment for it? Is there anything I can do to slow it down? I'm on a diet from a natural health provider to reduce inflammation.
I appreciate any insights from you veterans. I'm concerned that if I ever need to go on a medication it may be hard to tolerate.
Thanks and best wishes to you,
Sunflower
Dearest Sunflower, No one knows how 'bad it will get' for any one person. The first peripheral system that my Immune System attacked was my Moisture System, for my eyes and mouth mainly. That was diagnosed 21 years ago. Now I am a 'worst case' scenario for Peripheral Neuropathy. This will NOT happen to you.
What are peripheral nerves? I have extensive peripheral neuropathy (which refers to nerves that are not part of your brain/spine directly.) Lots of nerves are 'peripheral'; arms, legs, moisture system (the peripheral nerves running your moisture system are damaged, causing Sjogren's) all your organs, gastro-intestinal system, and so on. The nerves in my skin have been attacked. My small intestine is damaged. MY list is endless.
What Causes PN? Peripheral neuropathy can be caused by a bunch of things: heavy metal poisoning, alcohol poisoning, vitamin deficiency, diabetes (biggest cause), and attacks by auto antibodies (that means 'auto. immune disease) and in my case my immune system uses Cytokines to attack the peripheral nerves of my body. So I don't have an autoimmune condition, I have Immune Mediated Damage.
I most cases there is no cure or treatment for Peripheral Neuropathy. I wish I had good news. The doctor who diagnoses PN is a Neurologist. There are tests for the nerves in your arms and legs, but most other PN is diagnosed by symptoms.
I know of no dietary or other alternative approaches to PN that work.
My advice (feel free to ignore)
1. Go to a major University Medical Center for testing, diagnosis, and to find medication to alleviate pain. At a University Medical Center the doctors do research and keep up with the latest developments.
2. There is an entire 'industry' devoted to quack 'cures' and 'treatments'. Beware.
3. These things help: After you get a good neurologist
seek 1) counseling (therapy) to help you manage the emotional side of PN.
2) get exercise to increase your strength and general well-being. Warm water exercise in a pool is great!
3) rest when you are tired.
4) eat a healthy diet. Do not smoke or drink, of course.
5) Find a support group (in person or on line) to have a place to talk about everything and hear about everything!
6) help others in any way you can, this is the best morale booster there is
7) do not be afraid of medications to help your mood and your pain: you will not become addicted if you have good doctors. Most of the medications aren't addictive anyway.
8 meditation, relaxation, prayer: these practices help you stay centered.
Your concern about reactions to medications are very valid, Sunflower. Immune System problems often cause reactions to medication. However, I will try medications prescribed by my doctor, and monitor very closely. I have had to stop medications that had side effects. I discuss this with my doctors BEFORE I start something new. Most medications can be stopped immediately if a problem develops.
We are a special category of patient, Sunflower. Write out your questions and issues in advance of any appointment. If possible take someone with you to appointments so that there is another person noting what is said. This is just good practice and not a reflection on your confidence in your doctor.
I was 60 when my Sjogren's appeared. By the time my peripheral neuropathy in my legs was tested and diagnosed 8 years later it was profound. I was shocked. I really didn't realize what was happening to me and 'rationalized it' as getting old, slowing down, etc.
You are aware of your changes, Sunflower, so you are well ahead of the game!
Love, ElaineD (a sunflower, from the Sunflower State).
Thank you so much, Carolina/ElaineD. I remember you! And much of your suffering as another sunflower. Yes, I grew up in the Sunflower State as well.
Thank you for your lovely message, detail and explanations. I needed a refresher.
Thank you for your response about diet. Sugar is supposed to be an inflammatory source. Does it help to go off of it? I am pretty much off sugar now, off gluten, off dairy. I'm also on intermittent fasting to try to deal with the adverse effects of my Pfizers.
A major center is difficult even in the Greater Vancouver (Can) area. Especially now post-Covid.
I am going to print your reply and revive my Sjogrens file. I reluctantly took the two Pfizers because we had to cross into the US for our son's sake who had lost his wife. So many of my pre-existing conditions are triggered. It makes sense because one of the main adverse effects from the shots was/is inflammation.
I haven't heard of Immune Mediated Damage. How awful.
Hugs to you, Carolina/ElaineD
Sunflower 2