Symptom Progression

[abnel]

I've always assumed that it's normal for our predominant dysautonomia/POTS symptoms to change on a year by year, monthly (or even weekly/daily basis), starting with a constellation of symptoms, and having several of those becoming more pronounced at different times while others take a back seat. But I'm starting to wonder if I'm wrong.

I can see very clear phases in my illness, starting off with adrenal surges being predominant; then severe chest compression 24/7 taking over; and now shortness of breath eclipsing almost everything else. But even if the adrenal surges aren't predominat, I can still feel them lurking in the background.

Do any of you still have the same symptoms only to have them wax and wane in severity over time? Can you identify various 'stages' in your illness? Or have brand new symptoms emerged as time has gone on?

At this point I don't feel I am on any kind of a linear trajectory. I feel like I am inside a lottery machine and have no idea what number is going to come out next. I am still dealing with the same numbers I was given at the beginning, but I'm afraid a new set of numbers could be added to the machine.

Obviously this is quite a complex issue because many of us have discovered we have other medical issues at the same time. Throw medication into the mix and that can change things for us too.

I'd be interested to hear how you started off, where you were mid-point and where you are now.

[lgtaylor100]

I started off just with fatigue( April through June, 2010. Then within a few months (July and ongoing) I was experiencing tachycardia and sensitivity to heat. During this time I lost about 25 pounds unintentionally. Dry eyes was also one of my early symptoms.I was diagnosed with POTS in January, 2011. During that time I was sensitive to light and sound. That has since passed. I developed pain in my neck and back last fall and the pain has been ongoing and increasing. Now I have what seems like muscle weakness in my legs. The weight loss has turned around and I gained the twenty five pounds back. Yes, some of the symptoms have waxed and waned. Even the tachycardia waxes and wanes but the severe fatigue stays with me.

[Sallysblooms]

I started off with lightheadedness while walking once in a while for a couple of months, and then all in one day, everything failed. I couldn't do anything, horribly dizzy, lightheaded, tachychardia was horrible, nausea 24 hours a day, red hot at all times, blood pressure got very high and we couldn't get it down, air hunger, could not take any movement, just falling apart. Autonomic nervous system was not working at all.

Since starting my hormones and supplements with my integrative doctors, I have slowly gotten better and better over two years. My CFS is doing great and now since having POTS, that is taking time but slowly, I am improving and having a life again.

[stacdliw]

With Dysautonomia, my neurologist believes that over the last 17 years my disorder has progressed from Chronic Fatigue, to gastroparesis, to Autonomic Neuropathy/Dysautonomia, Pots, and now an idiopathic moderate/severe pain disorder in the upper epigastri area that radiates to the lower back.

I have only been been diagnosed with POTS for 17 months, but in the beginning, I experienced much more lightheadedness when standing. Other than that, the symptoms remain the same: breatlessness when walking short distances, debilating fatigue, and occasional hypersomnia.

[MomtoGiuliana]

For me, my symptoms peaked during late pregnancy through several months post partum. Since then I have had steady improvement of every symptom, with only occasional flare ups that over time have shortened in duration.

[abnel]

This is very interesting everyone, thanks for the responses and keep them coming.

Sallyblooms, I'm curious about your CFS which you had before POTS. A lot of people with ME/CFS also describe having the same POTS symptoms as you.

I am guessing you never had the orthostatic intolerance before POTS came along?

[louloutinks]

In 2002 I went to Dubai - I was very fit and healthy. I got off the plane with severe dizziness and ear pain, and fainted. I was in bed for the first day of my holiday. Whilst there, I got hives all over my body and another rash which got infected as it was so bad - I looked horrendous. Came home and another awful flight. I started to get skin issues - dishidrotic exzema and perioral dermatitis which was so bad that I had to take myself and son to my mums to look after us. My eyes were closed as there was so much dermatitis on them. Prior to all this I had flawless skin. I then started not to be able to sit in the sun as I got tachy and hives. Gradually over time I noticed that I kept getting dizzy/tachy/breathless on standing and even walking, I would have to find something to hold onto. I was getting serious problems with my sacro joint that I couldn't even get out of bed (I have EDS). Even walking up my stairs, I had to lay on my bed to recover - I was also so tired, I suggested board games instead of the park to my son - I had to sit down - my doc said I must be depressed but I kept on at him so my doc sent me to a rheumy who said I'd subluxed my Sacro joint - she sent me to London to see and EDS specialist. I told him about dizziness and he took my BP and HR (poor mans tilt) and said it was pots and to have salt and water. I had awful gut motility, dizziness,headaches, severe fatigue, pins and needles, burning skin.

In between this, another doc dx'd me with fibromyalgia.

I started to get numbness in hand/arm, BP swings, hot flushes, livedo reticularis, always cold but couldn't handle high heat, chest pains (ST elevations on ECG but no heart attack). Now I get all the previous but also painful hearing, hearing problems, serious headaches, neck issues, nausea, visual problems, flushing, tremors, numbness and rashes amongst others and was sent back to rheumy in London. He said it all seems to be to do with autonomic system but not sure about the rashes - he is sending me to the Autonomic dept at the Neuro Hosp in London to get it all checked out and asked them to check out/refer me for rashes.

Sorry that was so long but things have progressed. I must say that when I was 20 I used to faint a lot. I also was put on betablockers as my resting HR was 120 and was told I had anxiety. I found queuing difficult back then - was this pots with me back then, then my immune system took a crash in Dubai and pots has kicked back in full force?? I just do not know.

[sandymbme]

I started off with fainting with postural changes (during aerobics, horrible choice in hindsight!) 20 years ago, but that seemed to self resolve by simply not doing aerobics. Would have occasional dizzy spells, but nothing to write home about. About 4 years ago, woke up with massive migraine that lasted for months, eventually led to the Cleveland Clinic, a tilt table test, and a dx. Fatigue, migraines, and dizzy spells were major issues. Had GI stuff develop as time went on, but hindsight can now ascribe most of that to the Celiac dx I got in March. Back then I never really fainted, just got dizzy, perfected what I jokingly referred to as my "rapid sit". (Which was just falling on my bum.) Now, I also have an EDS dx, am incapable of probably 70-80% of the activity I had just two years ago. But I think that is more because EDS is progressive, and Celiac Disease interacts REALLY, REALLY badly with POTS. If I didn't have EDS or Celiac Disease I think I would have a much easier time managing my health. (I recognize this may be wishful thinking, though.)

Sandy