lgtaylor100

Sorry I meant dysautonomia. Back in May I was having some lower back pain and my doctor ordered a lumbar MRI. The MRI showed mild to moderate stenosis at L4 and L5. The pain management doctor decided that it wasn't bad enough to do anything at that time. My lower back pain started getting worse about a month ago and I had another MRI. This time it showed severe stenosis at the same points. Could this rapid progression be related to dysautonomia or to an autoimmune process that has not yet been diagnosed. My doctors say no. I think that it is pretty rapid progression and that doesn't seem like a normal degenerative process to me. Any thoughts?

I know most of us have difficult morning and sometimes feel a little better later in the day. Has anyone figured out strategies for feeling better in the morning?

I'm not sure I completely understand the term "homeopathy". Could someone explain?

I agree. I felt great in the pool this summer. Not the same benefit from an indoor pool. As I understand it the pressure of the cool water vasoconstricts, but the warm water vasodilates.

Does anyone know if these neuropathies are progressive?

I sometimes feel relaxed at night after the sun goes down.

Does anyone know if small fiber neuropathy and autonomic neuropathy are the same thing?

Mine was gradual. It happened over a period from April 2010 to September 2010 when I felt I couldn't work anymore. In April I was still having good and bad days and attributed the bad days to poor sleep. Starting in June I felt like my heart was racing although I never checked it to see how high.Everything worsened over the summer. There was one day in August when we were taking office group pictures for our website. It was 100 degrees plus and we were taking these pictures outside. I felt very dizzy. I went home to rest afterwards because I didn't have any clients until later that afternoon and felt my heart racing and being so dizzy that I really couldn't get up. I cancelled my clients for that day. I worked for about two more weeks after that through unbearable fatigue, dizziness, and tachycardia. Oddly I thought I was suffering from an anxiety disorder. ( I was a therapist and I guess that's how I thought.) Then I took what I thought was going to be a short leave of absence to rest and try to get my sleep problem under control. I never went back to work. The following January I was diagnosed with POTS and just two days ago was diagnosed with Small Fiber Neuropathy.

Yes, I do have symptoms when I sit. I can feel my heart thumping in my chest even though I may not have tachycardia at the time. Also, my head feels heavy on my shoulders and the fatigue persists even while sitting.

This came at a good time for me too. This is exactly what I am feeling. I think I have been in "denial" more than anything else. Every night when I feel a tad better I think I will wake up in the morning and be okay. This of course sets me up for failure because I am not okay. I think I could move toward acceptance a little easier if other people ( family and friends) understood what I am going through and how serious and debilitating this illness is but because they don't, when in the company of others I "pretend" that I am okay. I, too, have a hard time in that line between acceptance and denial. When I have a really bad day, depression sets in. My whole life has changed because of this illness, I had a rich full life and now I spend most of it on the sofa. There really is no one else that completely understands except for those on this forum and I am grateful that this forum exists. Lynne

I also recently had a sensory test for small fiber neuropathy (not a biopsy). The test had an abnormal result and the neurologist said that the SFN was the reason behind all of my autonomic dysfunction although of course he had no reason for why I had small fiber neuropathy. I wonder also, Jangle, if this could be progressive. I did not ask this question of the doctor but wonder if anyone here knows if SFN is progressive. It seems the pain and tingling have gotten worse and I'm wondering if it could get worse still.

Mine has ranged from 1:160 to 1:320, also speckled. This can indicate some autoimmune rheumatic disorder such as Sjogren's or Lupus but mine did not. No one has given me a definitive answer as to what this means.

Thanks Everyone - Dizzyblonde -I have only been on Florinef for 2 and a half weeks. The doctor also upped my midodrine at the same to 10 mgs.. I do feel better for a few hours some days but I think it's the increased midodrine. Also it's not much of a difference. The doctor did not tell me how long to stay on it and will not take phone calls.( see my other recent post) My primary said to stop taking it. Maybe I will try for another week and a half and see if I feel better then. Were you able to just stop taking it or did you have to wean off of it? Lynne

One of my doctors who had suffered from POTS and then recovered told me that Florinef really helped him. He said it made him have a lot more energy and feel that he could be fully functional. While I have a few good hours on some days I certainly feel very very far from fully functional. I am taking .1 milligrams in the morning. Would those of you who have had success with florinef be able to give me some specifics about how it is helping you? I know everyones' response to medication is different, but I am interested in how it has helped. Thanks, Lynne

I sometimes sneeze when I am nauseated. I gag and then I sneeze and I feel better. Isn't that weird? Does anyone else have that? Lynne

Thankful - I can't tolerate SSRIs so that is why I am on a tricyclic. Initially, I thought it helped me with the brain fog, now I think it may be losing its effectiveness at the low dose of 25 mgs.

I have been recently going to a cardiologist associated with a Philadelphia teaching hospital who has quite a bit of knowledge about dysautonomia. I have been seeing him since the end of October. He has recently increased my Midodrine to 10mgs and started me on Florinef.I have been taking theses new meds (dosages) for about two weeks. I also have been taking a beta blocker and a tricyclic antidepressant for about 9 months. He has also sent me to a neurologist who is also familiar with ANS problems and that doctor is doing a full neurological workup including a sensory test for small fiber neuropathy among other things. He is also trying to rule out other neurological disorders that may have been masquerading as dysautonomia. So far, nothing. I was very happy to have found these doctors since so few local doctors know anything about dysautonomia. The cardiologist does not take phone calls and insists that I communicate through my PCP. So I called my PCP and told him that I do not feel any better with these meds. When I spoke to my PCP after he spoke to the cardiologist, he said that the cardiologist said if I'm not responding to the meds I must not have dysautonomia. He says that he has treated thousands of people and they all respond. I am really frustrated and angry. First of all I have a positive TTT indicating POTS. I was hospitalized last spring and the doctor there said all of my symptoms are attributable to dysautonomia. I have gone to a top rheumatologist to rule out Sjogren's because I also have sicca syndrome. He ruled out Sjogren's and said my symptoms were attributable to autonomic dysfunction. I have also had lab work for just about everything that all came out negative. I also have a ANSAR test done by the same cardiologist indicating 4x normal sympathetic activity. It sounded like the cardiologist wants to wash his hands of me and send me to Mayo but I can't afford to go at this time. Thoughts? Lynne

Naomi - I think you are an amazing woman that you have had this symptom for 14 years and are still pushing forward looking for answers and raising two children at the same time. I also have the constant dizzy, foggy, spacey feeling. It rarely goes away. Sometimes in the evening when I am lying down I feel a little better. I have had this for a little over a year and a half and it has been an enormous struggle. I would like some relief but no luck so far.

Thankful - Do you feel that they are helping you?

My doctor gave me a prescription for above the knee compression hose. Does anyone have these. I can understand how knee high or waist high stay up, but what about above the knee? Does anyone wear these? Do they help? I am slightly overweight. Would that be a problem? Thanks for your help.

I have a bridal shower to go to next week. The bride is my best friend's daughter. I am planning on going but need some strategies to get through it and perhaps enjoy it. The timing is also difficult because it starts at noon and I don't start feeling even a little bit better until after 3. Any suggestions?

When I was a practicing therapist I used to use heartmath in my office. It is really good for heart rate variability. I forgot about it and may look into buying the program now. Thanks Kirsti for the suggestion.

Dizzyblonde - The water in ears feeling started with the Florinef. I didn't have it before. Fortunately, I don't have the headaches (not yet anyway) and I am going to try to stick with it because my aldosterone came back low on an blood test and I know that Florinef is what is prescribed for that.

Does anyone have experience with this. My PC told me that low CK doesn't mean anything; it is only high CK that is a problem. I did some research and it seems that low CK may indicate a wasting of muscle mass which would make sense because I have been so inactive during the past year and a half since I have been sick. Anyone have low Creatinine Kinase?

I told my ANS doctor that this past summer when I was in a cool pool of water up to neck I felt normal. As I expected he said that this was from the vasoconstrictive effect of the water. He said that it had nothing to do with the temperature of the water but the effect of the water pressure on my veins and suggested pool walking as an exercise to train the "muscles" in my veins to constrict.He suggested 40 minutes 4-6 times a week. I believed that the positive experience in the water came from the cool water,not necessarily the water pressure, as I also noticed that being outside when there is a cool breeze also makes me feel better. Well, I went in a heated pool yesterday, (I'm in Pennsylvania) so there is no outside swimming this time of year and indoor pools are very warm. I did not have the same positive experience as I had in the cool pool and felt just as Potsy in the water as out. Never the less, following his instructions I did walk in the pool for twenty minutes. I am very achy after this and could not possibly have walked for the forty minutes. I can only do about 15 minutes outside on dry ground. I'm interested in anyone with pool exercise experience chiming in, particularly about the vasoconstrictive effect of water and my doctor's "training" philosophy. Lynne