Each Day A Different Set Of Symptoms

[jbenz1772]

Just want to feel normal again. My mom asks me whenever we talk "How do you feel today?" I've learned to say "okay today" or "I'm in a flare up". Followed by " Each day is a different adventure". I'm pretty new to this, even though I've had different symptoms for years, only to go into high gear since last summer, and diagnosed in January. I'm learning to try and figure out what are bad days and what are really bad days.

Do you all feel different every day? I can have a tolerable to not so bad week, followed by something terrible. My husband says he knows when it's coming now. My leg trembling the other night woke him up, but not me. It's usually my numb arms that wake me. But today I went to the bathroom to cry at work because the pain was so bad. But I'm so afraid to give up work, that I'll never get back to baseline again. I called the Dr to explain that the propanolol addition has reduced the headaches, but I don't think the lexapro is helping with the neuropathy. That my days consist of work-then home to bed. The muscle twitching, (I'm sure everyone thinks I'm winking at them even though it's just my eyelid spasms)numbness, skin pain, hives, stabbing pain, aching fatigue. normal??

All of you with small fiber neuropathy....what can I expect??? Is your pain different each day?? What helps with the pain?? Has yours progressed over time? With my last appt with my neuro we talked about POTS, meds and stress, but didn't really go over the expectations of the small fiber neuropathy.

Thank you all for sharing. This site really helps me feel less alone.

Learning to cope,

Jennifer

[janiedelite]

I've figured out that stress, heat, and activity will flare up the SFN pain as well as it flaring during evening hours. Also, anything that causes dehydration will activate my POTS, stress my body, and cause more SFN pain. I can also tell when the weather is going to change more because I have more fatigue and pain at those times. My symptoms vary somewhat, but I'm getting so that I can tell if I've pushed my body hard enough to experience increase pain. Lately it's the fatigue that's been so debilitating.

At my last neuro appt, we talked about pain that I've been experiencing in new areas and he did say it could be the SFN progressing. I've had POTS for 5 years and SFN for 3 and 1/2 years.

Right now, I'm just feeling very tired of the pain. I started with itching of my feet, which progressed to burning of my feet, then hands, face and mouth. I started having aching arms and legs a few years ago and now have twitches, shooting pains and numb patches. The twitches mostly occur at night.

I'm sorry you have to deal with this. Best wishes!

[HopeSprings]

Yes, the symptoms definitely wax and wane. Some days are better than others, some weeks are better than others, sometimes you're dealing with a bunch of old symptoms, sometimes new ones will rear their ugly head - it's exhausting. And makes it very hard to make any sort of PLANS because there it no way to predict how you are going to feel. I am scheduled to meet with a Dr. to look at the possibility of SFN because I have burning feet (only at night when laying down). Just another thing I will probably end up checking off the list of possible causes. I think this was discussed before, but I forget (and am too tired to go searching through old posts)- how were you diagnosed with SFN and does it cause the POTS symptoms?

[Sallysblooms]

Has your doctor helped with supplements? Alpha Lipoic Acid (I take Lipoic Acid Supreme), B vitamins and other good antioxidents help the nerves heal. I can't believe more doctors do not study how to heal the nerves instead of just giving pills.

[jbenz1772]

Hi Naomi,

I had several autonomic testing done. I had a QSART which hooks up to arm, foot, ankle and leg to test for sweat response as well as a thermoregulatory sweat test. That's a great one. You wear a disposable bathing suit, lay on table in hot room with orange powder on you while your temp rises. Once you reach 38 degrees celcius they take pics of you and study your sweat pattern.( I have complete sweat loss on lower half of body). As well as the vasovagal breathing test and Tilt table(which proved positive for POTS).

Sallysblooms,

I will be talking to the Dr. next week about the supplements. So far she doesn't have me on any.

Jennifer

[HopeSprings]

Hmm, just went through some old autonomic test results and it says "Sudomotor Testing - Sympathetic skin response normal reponses both hands and feet to electical stimulation and cued cough. No evidence of parasympathetic cardiovagal or sudomotor dysfunction for age." Do you know if this was the QSART test? Maybe SFN has already been ruled out through these tests? But then why do my feet feel like they are on fire every night? I just really can't go to another useless Dr's appointment and this one is all the way in the city, I'd have to get a babysitter -whole big ordeal to get to. I'd rather save myself the hassle and dissapointment.

[Victoria]

Hang in there, Jennifer. I hope and pray tomorrow is a much better day for you and that your doctor prescribes something that will give you much needed relief.

From what you describe, I had the very abbreviated version of the QSART. Thank you for the explanation, I've been wondering about this. . . .

[Sallysblooms]

Good luck Jennifer. I hope you get lots of help and your doctor will know the supplements that help with symptoms and healing.