Chronic pain because of idiopathic neuropathy in you late twenties?

Anu:
Neuropathy can affect anyone of any age. Neuropathy is not a condition that is age determinate.

Idiopathic neuropathy identifies neuropathy of unknown etiology or unknown origin. Your physicians are speculating an auto-immune causation. Auto-immune conditions for individuals in their 20s, as you are, is not uncommon.

Auto-immune conditions are conditions where the body “attacks” its own tissues, a body-on-body response that is hypervigilant. Auto-immune conditions can take months or even years to fully present themselves before a clear diagnosis is possible. Many auto-immune conditions are slow and insidious in their development, waxing and waning with symptom presentation over time.

An auto-immune neuropathy most commonly involves a heightened state of inflammation in the body where an overly zealous inflammatory response has a detrimental effect on peripheral sensory nerves. Peripheral nerves in the distal feet and hands are more common that nerves of the central or core body.

Prednisone, as you are on, is a drug which acts to lower inflammation that is systemic or detrimental to the body. Prednisone is a corticosteroid with potent anti-inflammatory properties. By blunting possible auto-immune based inflammation, further damage to your peripheral sensory nerves should be lessened. This is likely the objective of your physicians in placing you on prednisone.

As you are in a corticosteroid (prednisone) you would be wise to inform yourself of the risks and benefits of corticosteroids. Corticosteroids are not benign medications.

At a dosing of 5 mg a day, you are taking a low but potentially physiologically altering dose of corticosteroid. At 5 mg per day, you are taking a dose of corticosteroid that will suppress your pituitary gland with potential life-altering repercussions. Pituitary suppression means that the pituitary gland will go into hibernation and suppress production of the hormone ACTH, which serves to communicate with the adrenal glands to secrete cortisol. Cortisol is a life-essential hormone produced by the adrenal glands. In taking exogenous prednisone at 5 mg per day, your pituitary gland correctly reads that you need not produce cortisol to meet your body’s steroid needs. The prednisone that you are taking provides sufficient steroid to meet the body’s minimal needs. The problem will come when or if you are taken off of daily prednisone. Once suppressed, the pituitary gland is often unable to re-boot/awaken. In this case, secondary adrenal insufficiency results.

You will want to become familiar with secondary adrenal insufficiency and its symptoms. Secondary adrenal insufficiency is not on the radar of most physicians (even rheumatologist and endocrinologists can be lacking in diagnostic acumen). Symptoms: Unrelenting fatigue; severe muscle and joint pain, diffuse body pain; brain fog and difficulties with higher level thinking and reasoning; postural hypotension, low blood pressure; difficultynwith temperature regulation, feeling hot and cold; digestive distress, lack of appetite, diarrhea; sensitivities to lights and sounds. Be aware of secondary adrenal insufficiency and be prepared to advocate for diagnostic testing and recognition of this disorder when/if your prednisone dosing is reduced or discontinued.

This is a welcoming forum. Chronic loss of health health can be an isolating and lonely experience. This forum provides a ready means to connect with people with similar or like conditions and symptoms. I hope that this forum can provide you with a place to share and meet others who have similar experiences as you do. Neuropathy is a common thread of many who visit and post here - young and middle-age and older. Welcome to our little corner of the internet.
Karen

Hi Seashell,
Thank you for your extensive information on the matter. English isn't my first language so forgive me for the grammar.

At first they didn't even believe that I was having pain, I went to a lot of physicians they either thought I was making stuff up or just didn't want to take the time to do a full check up. Two years ago I was almost hopeless I came across a neurologist who promised that she would find a cause for the pain. I had to undergo a lot of test. The result where disappointing.
The only sure thing it showed was that there was a lot of inflammation somewhere in my body. Most likely in the nerves of my feet cause that was the place I had lots of pain and had started to have a lot of difficulty walking.
She than put me on prednisone 60mg per day and told me to go see a rheumatologist.

After I got my story out again he let me stay on the prednisone but I had to down the prednisone every other because, just like you said it has also a lot of problems. He than gave me imuran. After 4 months I was finished withe the prednison and he than told me the imuran would do all the work from now on.
But I wasn't that lucky.

Without the prednisone to fight of the bad effects of imuran I started having anemia. Which they didn't catch on because they didn't actually anticipated that someone would me getting bad effects from the imuran. It took them almost 7 months, I was on the verge of dying when I was hospitalized. They took me of the imuran and put me back on the prednisone.

After a month they put me on Methotrexate and told me to numb down the prednisone but not to stop. So now I'm on 5 mg prednisone everyday. The reason why they also wanted to get me off the prednisone is because I was getting a lot of side effects. Same is happening now too but I have to bear it.

The pain is really bad, I'm always in pain. I have tried a lot of pain killers nothing works, Gabapentin is the only that at least tries to make difference which isn't much. It takes a lot of energy to endure the pain, energy that I don't even have. I can't sleep all day cause that makes the pain worse so I have to stay awake even if I'm tired a lot. I'm nauseous all the time so I have a lot of problems with eating. I become nauseous when thinking about food or when I think about eating them. That is a problem cause food gives energy and I need energy to endure pain. So no food means little energy, so I have a lot of problems enduring the pain.

My Doctors can't do much for me now than to fight back side effects and increase the dosis. I don't want to stay like this. I can't even walk to the toilet, I have to wear diapers.

Post Edited (Anu_anu) : 5/3/2018 9:16:26 PM (GMT-6)

Anu, by chance have you been evaluated by a rheumatologist? Just a thought here & keep in mind none of us are drs. People that have a condition called rheumatoid arthritis start out with having issues with their feet & sometimes their hands. They are often prescribed Methotrexate too, although there are other medications used to treat it. Rheumatoid arthritis is an auto-immune disease.

How long have you been on these medications? It can take some time to see how a person can tolerate the side effects or to see if the medication is going to work.

By the way, your grammar is fine! Take care.

I really think I have this but I can't find a doctor who will help me!!!!! I am at loss of who to go to next, I just posted about this.

My pain started in my feet and its horrible. It gets to where I can't walk or stand. It hurts even when I am sitting. No doctor knows what is causing it, all I know is that Gabapentin helps. I can't function without it. My doctor actually wants to stop giving it to me, he said he didn't intend this to be long term. I have no idea where to go next, I need help! Who diagnosed your neuropothy? I tried a neurologist but my tests came out normal. But what the heck else is it??

My doctor gave up. I was looking to see what other doctor I need to go to. I didn't even have a blood test done!! I wish I did! And the crappy thing is most of these doctors I can't go to without a referral. I guess I will try a rheumatologist next and see what they say

Are you on any medications for the nausea? If not, you should ask for one. If you are, and it's not working, ask to try a different one.

Ginger is also really good for nausea and there are several ways you can take it.