Nymph

I finally got the results back from my skin biopsy and apparently everything looks great! No SFN. This makes me happy, as I was not excited about looking into immunosuppresant drugs to add to my Sjogren's mix.

So here's the deal. I've had hot flashes at night since puberty. I've had allergies and random hives and reactions all my life. I've borderline hypermobile on the Beighton scale. I've had shakey episodes I attributed to hypoglycemia since my early twenties. And I developed more classic POTS symptoms around 30, when my Sjogren's symptoms started.

I do have persistent neck pain and my cardiologist wants me to get a cervical MRI, but I think that's because he has a preconceived idea that most POTS is due to cervical/brain stem issues.

I'm not sure what to pursue next or just to leave it. My symptoms have become more pronounced and regular this year, but I am still quite mild and functional, now that I have learned how to help myself. I do wonder if this is going to get worse, though.

I am so tired of doctors! On the other hand, I would be interested in digging further into the cause if it would be of practical benefit.

What are your experiences? Has it been helpful to pursue further diagnoses? How so?

I drink 2-3 cups of tea a day, mostly black. I make sure to stop by 2 or 4 pm, depending on my bedtime. I drink coffee occasionally - more so when I'm exhausted and can't function otherwise, or as a treat (espresso with whipped cream!). Sometimes coffee can trigger a migraine for me, so I have to be careful about how I feel. Also it can increase the anxious stomach feeling that goes along with the worst POTS symptoms. If I am having those I actually crave caffeine, but it's dangerous! So it depends. Most of the time, I think that it helps me - probably the vasoconstriction. I find that tea is also quite soothing.

Thanks for the article, Katy!

Personally, I wonder whether it would even be worth it to me to be tested for MCAD. I already take a daily antihistamine. I'm thinking of a trial of nasocrom, because I can't use my nasal steroid routinely anymore. I have used an H2 blocker in the past but don't anymore thanks to being gluten free. I have tried a low histamine diet and did not notice any difference. I am so tired of going to doctors!

Can anyone think of a good additional reason to confirm this dx?

Interesting theories. I get these too on my neck. For me they are more like red, itchy streaks. I usually get them after a shower. I, too, take an antihistamine daily as I have many allergies. The sympathetic discharge idea seems likely to me because it's after a shower when I would have more pooling.

Yesh - I don't know - Why the neck?

I think so, Sarah. When I have a lot of pooling it feels like bloating and my appetite is decreased.

Unfortunately, after I had only worn my homemade binder for a couple of days, I had to take it off due to upper abdominal/mid-back pain, nausea, and headache. This is fairly unusual for me, and I'm not sure if I caught a bug from a student during the last week of school, or what this is. It is taking its time working its way out and I have been on a very restricted diet for several days. I am hoping that it will resolve soon and I can back to wearing my ACE-Brace.

I love Flagstaff! I lived there for four and a half years during college. POTS was not an issue for me then. In fact, I had my first severe POTS episode when I was back there visiting. I think that 7000 ft elevation may be hard to deal with. The summers and falls are gorgeous! However, the winters can have a good deal of snow and be quite cold. I also have Sjogren's so the dryness would be an issue for me. I actually need some humidity! We are all different, and unfortunately ideal environments are hard to come by. Close enough is a good bet.

I live in the southern Appalachian mountains in NC. It's not Hawaii, but the climate is quite mild. Daytime highs are in the low 80s in the summer. Winter it does freeze at night, but daytime temps are usually in the 40s or 50s. I live at about 3000 ft elevation, which is how high you need to be to have the cooler summer temps. Other than San Diego, this is the mildest climate I've lived in, and it's much cheaper! Costa Rica stays around 70 all year long, and it's not expensive. It's also mountainous - don't know the elevations. I don't know how you'd feel about moving outside the country.

I get neck pain before a migraine. I used to have at least one a month, and sometimes several in a row. However, since I've been gluten-free I have them much less frequently - maybe 4-5 x per year.

I have good days and bad days, but have been having semi-bad to bad days for over a week, so I think it really helped. Also, I took it off after work because I wanted to lie down on the couch for awhile. I definitely felt the difference when I got up again.

Welcome!

I am also fairly new to this. I would add to your hydration and salt compression hose and/or abdominal compression. They really help me. However, my bp never goes up, so it may or may not work for you.

I have also had the racing heart at night a number of times. It's a horrible feeling. At times for me it has occurred after I drank some alchohol. I can usually handle a very small drink on occasion before bedtime. Maybe I was not well enough hydrated? I don't know. Does this happen to you all the time, or just sometimes? You could keep a journal of possible factors to see if anything contributes. I now keep some GU electrolyte packets in my bedside table to have with water if I have an episode. I think it helps.

I rigged my own abdominal compression today out of an ACE bandage. I am impressed! It was a crazy day at work and I had to be on my feet much more than usual. I was also standing out in the heat for a while with the kids. I have not felt lightheaded at all today, and my feet did not swell as much, either. I did order a binder, too, so when that comes I'll try it out. The ACE bandage is very comfortable, though. It did not make me hot at all. I may just keep using it to save $.

That's about how long it takes me to drive to Asheville.

My belly is always much rounder at the end of the day than at the beginning. I am quite small so it's very obvious. I think it would be worth trying a binder, since the stockings help so much.

I know I have pooling in my hands and feet because they turn purple. How do I know if blood is pooling in my abdomen?

Compression hose have helped me a lot. I wonder if abdominal compression would add anything? If so, are corsets or tummy-control panties more effective?

Thanks!

I usually get worse with my period.

I have found that 4-6 g of salt a day helps me to be able to drink more and not be constantly peeing. You mentioned sprinkling salt but you didn't say how much. When I was taking only 3 g it didn't help at all. I had to take more. Balancing it with potassium is a good idea. I am still trying to figure out how to do that but the no/low salt thing is a good idea I had forgotten.

One more thought. Friends of mine used to have trouble drinking enough during pregnancy due to nausea. One found that sparkling water went down better. Another drank iced white tea. Experiment with what works for you. There are so many options.

HLT, it is great to hear from a teacher. When I was dx'd with POTS in November I was a mess. I had just taught for a week-long practicum and felt terrible. However, now that I have modified my lifestyle with hydration/compression, and know to not push myself to stay on my feet, I am doing a lot better. I have been working as a TA in elementary for the last couple of months. I have been feeling pretty good, and am more convinced than ever that I want to teach. My licensure area will be in secondary so I think that will be physically easier, as well.

Thanks for the encouragement!

I do not have a problem with my stomach with salt pills. However, I do sometimes have problems swallowing and I have to swallow a lot of pills. One trick I learned is to put my chin down to swallow. It is counterintuitive but it really helps.

... including our new group in Asheville! We would love for you to come.

‪#‎dysLifeCarolinas‬ Meetups are June 13th at 2pm in Asheville, Charlotte, Greensboro, Raleigh-Durham, Wilmington & Winston-Salem (12pm). Please RSVP to the event that is most convenient for you. We hope to see you there!

Review the event hyperlinks below for location and details.

My favorite shows on there are White Collar and Royal Pains. I also just started watching Chasing Life, and like it so far. I think it's worth it but as far as movies the ones they have on streaming are not always that great. I don't know how often you watch movies but if it's just occasionally you can get those from Red Box and just get your TV through Netflix.

Awesome!

Awesome, Sarah!!! I am so excited for this to work for you!

hugs and prayers your way,

Nicole

Some people do go into remission with autoimmune drugs. Most have to stay on the drugs, although sometimes at a reduced dose. Very few, if caught early enough, may be able to go off the drugs after a remission and maintain the remission. This info is based on my reading about RA in particular, so I know very little about remission in other diseases.

Thank you, Sarah! Actually, I don't know when I'll get the results. I had the biopsy last Wednesday. It does not matter too much as I won't see my rheumy until July, so I ahve plenty of time to think meds.

I have heard something about TNF inhibitors being used for people with RA helps SFN. I will have to look into that. Thanks!

Hi Janet,

Well, I am very interested to hear about how this works out for you. I am waiting on some biopsies to see if my POTS is neuropathic. I already know I have autoimmune issues. If you find out what the other treatment options he mentioned are, please let us know, because I am looking into my options as well.

Cheers,

Nicole

I don't neccessarily think that they are using us as guinea pigs. After all, biologics have been extremely effective for some people. Since I may develop RA I am glad that there are at least options now, even if they aren't the greatest and aren't effective for everyone. However, I agree that ivig has a much more favorable risk/benefit ratio. Different docs have a different read on what's acceptable in that ratio. However, I do think that's a decision I will need to make for myself. However, ivig has major access problems, which you know. I highly doubt that any doc is even going to recommend that for me until I get considerably worse, let alone get it paid for.