For those lucky enough to get better.
 

Did you symptoms continue in reverse order.

Example:

First symptoms---
Tingling
Pins and needles
Burning
Stinging

Then ---
Stinging more
Burning
Pins and needles
Tingling

Just wonder if you have a timeline or changes in your symptoms.

TIA

IMO I don't think there's a particular rhyme or reason for the order of symptoms. I had mostly all the same symptoms in the beginning that I have now. For me, sometimes for a time a symptom seems to stop completely but then it may suddenly reappear.

What has changed since this started is the intensity and/or frequency of symptoms lessening, making them much more manageable. Even when I flare now the symptoms are nowhere near as bad as they were. Yes, it's a bummer when I flare, but I have to keep it in perspective because I've come a long way in the past 9 months.

I attribute much of my success to the good people on this board who have helped me in more ways then I can list. Because of them I have been armed with the information I need when seeing a doctor, been informed about meds and supplements so I could choose ones that could help my SFN, educated about things that are harmful to my nerves, and given the support I so badly needed.

Hang in there. carol

I blanch at claiming getting better, but these past few weeks my symptoms have lessened due to reduced stress from altered job function. Now, the changing seasons are still causing flares, I still have symptoms, when I get home I am fairly shot, but overall I am in a better place.

I am a novice to sub novice on the mindfulness front- in fact I find it useful only up to a point- but it is indeed important to try and reframe your mental state, I think.

I hope you get an answer from someone who has truly had some healing or improvement of symptoms because I still wake up nightly, my body is very forthcoming in letting me know when I am next supposed to medicate and I have the same trials I had a month ago. I have thankfully sloughed off some stress, which is wonderful.

I somehow managed to upgrade my view to a winter sunset over Lake Erie too.

How about them apples? Wait, I skip those, too much of a glycemic index hit.

My best Baba,

Jon

I am never sure about the notion of getting better. Sure i pray and always stay positive on that front. At the same time, I have never had a doctor tell me that the outlook is good from the experience he has had with patients.

At the same, I feel like I have had improvement of late. Some new supplements I have added have shown to be effective, keeping positive, avoiding pain triggers, etc. I do not have the will to actually test myself with obvious food triggers though. I just will not do it. Pain is a great motivator.

To your question - I have not experienced the "buzzing", "vibrating" sensation I had early on. It was basically my first big unexplainable sensation. "Prickling" was also a big complaint and that is greatly reduced. Its seems to have completely gone. I am not sure if that's a good or bad thing though. I still get burning and the stabbing to the bone type pain, especially when it's cold. I have not had any serious autonomic symptoms start and have been tested for that as well. So, lack of progression is very positive.

Many times, unfortunately the good periods are followed by a bad "wake up call" period. So, i try to enjoy the respites while I can.

Give me six more months and I might have an answer. I had a spinal fusion done almost 6 months ago (L3-4-5), my surgeon has told be based upon others he has operated on, that around the one year mark I might not need to take Gralise (Gabapeton). The nerves could be all good by then.

He also said I am unique in the fact my neuropathy was brought on by a critical illness so I might have it forever.

Since the surgery I've only had a couple of bad days or flares as they are called. I've said that much of the pain I felt was from my back so I guess only time will tell.

Work is the worst thing for me, so we are going to explore other office options like a standing or adjustable desk & chair.

Good luck I hope you find relief.

What a strange trip it's been
 

Baba, you have become much more resigned or a lot less panicked than you used to be. Perhaps your inner strength has increased. Anyway your story has changed over the last 400 posts also. I don't think the trip is over, I don't think it will ever be over. I have stopped all pain meds and all sleeping pills now and keep a (stash) of Tylenol w/codeine for road trips and such. I was lying across the bed last night and felt an old familiar vibration that spanned from left to right in the pelvic area and I thought to myself that the sensation was familiar but not recent at all. Perhaps over a year since I had felt that. I still have much difficulty lifting my leg into my truck.(an early benchmark that is little changed) Cold weather is not going to be a friend as I feel the constrictions of added pain and lessening range of motion. So in conclusion I feel that symptoms will change as we evolve with the condition and the total perception may be seen as improvement but I'm not ready to categorize any of it. The pain that has left me had no resurgence before lessening. It was like watching Houston in the rear view mirror, a long time going. Is it too early to wish you happy holidays? Ken in Texas.

Yes, I was panicked. Pain like this is very difficult and was told often I was crazy by several doctors, family, and friends. Thing is, no one had characterized me that way before.

Thankfully folks here have helped me and I have a neuropathy support group.

I was so hoping that since I continue to progress, maybe I am closer to healing.

Now, I have a frozen shoulder. Guess the body is just not what it used to be.

Happy Thanksgiving to you Ken and everyone else.

Hi baba

I can sympathize. Sometimes it feels like my body is just an ** haha :)

Autoimmune illness, sfn, hypothyroidism, anxiety disorders, Lyme disease badly as a child, hypermobile joints that do whatever they want...there is always something hurting, wrong, off, etc.

I was panicked and depressed when sfn hit a year and a half ago. I couldn't believe I was getting ANOTHER problem. I dealt with a terrible increase in anxiety and a bad run with depression as a result.

Eventually though, as always, I adjusted. The human spirit is often times resilient. I don't know if I improve if I worsen. It is hard to read my flares and symptoms. All in all I just try to do the best I can and live life outside of my head.

I think it helps me to envision myself as getting better when I'm really down. It may be some sort of denial-but it lifts anxiety and depression for me, and those two things lifting help the physical pain quite a bit.

Hi ellsac
Glad to see you back on NT - hadn't seen you around for a while and been wondering how you were getting on with the Addison's, SFN and other issues.

Like you reading symptoms is getting difficult for me - sometimes I can't tell whether a new pain is neuropathy, osetoarthritis or a hidden infection.

Do you feel that the hydrocortisone sometimes masks the severity of the pain? ie mornings aren't so bad because of higher dose but at night/early morning it get's tough. Are you able to take any pain relief that doesn't affect the hydrocortisone?

Thanks in advance - bluesfan

Hi Blue,

Personally, I don't think the hydro hides anything for me. I'm only taking enough to cover what my body should be making, so there shouldn't be too much surplus-and my blood work reflects this as my doctor regularly tests my ACTH, and my body still produces it. If I were on too much steroid, it would be unreadable (which happened in the past, so we dropped the dose down). I actually think I am on too low of a dose at times, but for the reasons you stated, I keep it low to avoid side effects. I am frequently achy, with achy bones, probably due to having just under what I need-and this goes for morning and night for me :) sometimes morning is worse than night due to stiffness. I am pretty sure I am developing arthritis at the ripe old age of 35 haha for extra fun. So I am trying to do some muscle strengthening exercises around my joints. Of course-finding energy for it is like tapping an empty keg :) but I'm making some progress.

I am very fortunate, and I don't have too many really painful flares. I had one a couple of months ago for a few weeks, and the about 3 months before that, and the worst flare was back last January. I haven't taken pain medication. I have take klonopin, however, in small doses. Never daily. It's a benzo med (like Xanax) and it helps me relax. That in and of itself can help a flare for me.

There are still days when things are hard, because yes, telling one symptom from another is really challenging-so when not sure what is wrong, I'll often opt for trying to get some extra rest haha.

I know my attendance on the forum is kind of spotty. I also have OCD for extra fun, so I help out at an anxiety forum because even though I will always have anxiety-therapy put me into recovery with that for the most part.

We also just bought a house a few months ago, and just adopted a shelter dog 3 weeks ago. We are going to try for a baby in a year. I guess I'm stubborn and won't let my crazy body slow my life down more than I'm willing to accept...but who knows what the future holds. How are you hanging in?