kitchmill

I did end up trying one other form of Vitamin D and it caused the same symptoms. Now, I'm too nervous to try anything else. I have to work full time, and the side effects make me too scared to drive. I can't keep feeling like that just to experiment with different brands, versions, etc.

The doctor was very thorough and I really liked her. She explained that my "slightly positive" ANA is normal for someone with autoimmune thyroiditis, but with my family history of autoimmune disorders she wanted to run the battery of rheumatologic blood tests anyway. She is pretty confident that everything will come back fine and that all of my symptoms point to fibromyalgia. Most of the fibro trigger points made me jump when she checked them. Also, I thought it was pretty interesting that she took one look at how my elbow bends (hypermobile) and started talking about EDS. Many of my other joints do the same, and my skin is very elastic. It doesn't seem like a very bad case but she warned me that I could easily dislocate something. She also mentioned that the hypermobility could contribute to some of my muscle pain. And of course she explained that EDS is a connective tissue disorder. I never really thought of myself as having a connective tissue disorder since I don't have any skin involvement but obviously there is much more to it than that. So she gave me some samples of Cymbalta to try for fibro, but also gave me the names of some other meds. She was very understanding of my chemical sensitivity and said she would let me try any of those meds that I thought would be best. I'll give the Cymbalta a chance, and then I go back in 3 weeks to go over the blood test results and whatever I want to do about the medication. She also suggested physical therapy, which I said no to for now. I did that for 3 months for my neck and shoulder and didn't really get anywhere. Not to mention that with working full time and 2 small kids at home, I don't really have the energy for PT right now. Maybe later. She outlined a very light aerobic program to start building up a tolerance so I guess I'll have to give that a try. I just hope something gives me a little more energy soon!

Thanks for the responses. It's nice to know that at least I'm not alone. I just want to stop the decline. I feel like my somewhat normal life is slipping away. And none of the meds help. Yeah, I guess they do for a little while, but they always stop working or I build up a tolerance and then I'm worse off than when I started.

I feel like I have "a little bit of everything." No diagnosis is definitive. Had the day/night sleep study and the results were "in the grey area." Not quite narcolepsy, not quite normal. My primary did some rheumatologic blood work, which was also crazy - ANA was positive, titer was borderline normal. I'm seeing a rheumatologist next week, but I feel like it will be another battery of tests with no answers. Just from my research, I would say Lupus is the closest match, but it's not clear cut. Just wondering if there are any rheumatologic issues that go hand in hand with POTS. I've been living a normal life for the most part, although I have always tired easier than most people, but now I feel like I'm in a steady decline. I just want to know what's going on and how to deal with it. ETA: after the sleep study, the doc put me on Nuvigil to help with the tiredness but I'm not sure it's making much difference.

I was taking a liquid form of Vitamin D because I thought that was absorbed best, but maybe I'll try it in another form. The codliver oil + vitamin D sounds like a good alternative, since I recently started taking fish oil anyway. My doc told me that my HDL is low so I am trying to also bring that up. Dana, I was wondering about the parathyroid issues, but I just looked over my lab results and my calcium has always been in a good range. Always right around 9.5, which seems to be smack in the middle.

I know at least one other person here said they had the same reaction as me... waves of sleepiness, different than typical POTS symptoms. My primary doc (the one who suggested I take the Vit D) of course had never heard of this. She even called around to some endocrinologists who also had not heard of this side effect. I'm trying to figure out what it is that's causing this intolerance. On the one hand, I won't take the D because of it, but on the other hand, I know I really NEED it to feel better. My last level was 17, so I'm guessing that bringing that up would help me somewhat. I also ran this by my neuro, who hadn't heard of it either.

I think my biggest fear at this point is that they WILL find something wrong and tell me that it can be fixed with (more) medication, but I can't seem to tolerate the types of meds that are prescribed for this. Heck, I can't even tolerate my RX migraine meds... as I sit here now barely able to function from a migraine! I definitely do not sleep well these days. But the daytime fatigue is not new although these waves are new. Guess we'll just see what they say. I have an appointment on Thursday to meet with the sleep doc and discuss everything. My primary also wanted me to have a sleep study done (although she was in no rush for me to do it) for fibromyalgia. So one way or another I'll have the sleep study. It's just a matter of what else the doc wants to look at.

I've been having these spells where I feel like I'm asleep on my feet, like a wave that just comes over me. It lasts for less than 10 seconds and I can continue a conversation through it. It's totally different than my POTSy episodes. No blackouts or tunnel vision. My cardio thought it could be caused by the midodrine and wanted me to go to the neuro to rule out any other problems (in which case he'd take me off the midodrine which I really don't want him to do!). The neuro wants me to stay on the midodrine, and suggested a sleep study to check for or rule out narcolepsy. Just doing a little research on the internet today, and I do have some of the symptoms. Restless legs, waking up with uncontrolled muscle spasms, and of course, the feeling of being asleep on my feet. Has anyone experienced anything like this? Anyone else diagnosed with narcolepsy? ETA: Waking up with headaches was another one of the symptoms.

Wow, I could have written your post almost word for word! Same pains, migraines, been to PT, etc. I've also had trigger point injections MANY times, and once my pain got so bad that I concented to facet injections. SCARY! But, it did work to relieve the major spasms. Unfortunately, I'm left with the daily/regular spasms still. My next step at this point is to see my neuro. Had an appointment set up with her which got cancelled, so I'm waiting for my rescheduled appt now. I have no idea what to expect though. I'm just tired of all of the pain and migraines at this point. Everything that I've tried (migraine meds, preventative meds, physical therapy, injections, acupuncture) seems to work for a period of time and then I feel like I build a tolerance to it and I'm back to square one. So, no advice, but I can totally empathize with your situation!

If you store your fish oil pills in the freezer and take them cold, they don't make you burp. I've been taking them for a few weeks now with no problems.

Thanks for the tip, Noreen. I have to put a call into my doc, but I'm going to wait another week. I have a colonoscopy coming up this week so my diet is all screwed up anyway. I don't want to start taking anything new until after I can go back to eating normally.

So, I've been taking the D3 for 2 days now, and I feel like I'm sleeping on my feet. I keep feeling like my BP is really low, even when I'm laying down, but when I take it, it's only the usual low. I actually had to stay home from work today because of this! I feel awful if I get out of bed. This better go away quickly!

I'm curious to know if you find something to help! I am pretty much in the same boat as you... POTS, CFS/FM. Although right now I'm suspecting Rheumatoid Arthritis. I'm actually seeing my doc about that today. In general, I have my coffee in the morning (it's amazing what a difference the caffeine makes!) and take 5mg Midodrine 3 x a day. That helps keep the BP up, but does nothing for the fatigue. Good luck to you!

I was just told today that I am vitamin D deficient. This was from my primary doc (not my POTS doc) who is checking to see if I also have fibromyalgia or some other condition. She suggested I take 4000 miu a day. I just ran out and bought a bottle of D3 liquid. Each dose is 2000 miu. We'll see how it goes...

Every now and then I get these episodes where I feel like I'm asleep, but I'm wide awake and maybe even walking or moving. It's totally different than my POTSy episodes. It lasts about 10 seconds and then it's gone. I explained this to my cardiologist at my last appointment, and he said the Midodrine could be causing it and it could be a mini seizure. He wants me to see my neuro and see what she says. He also said that if the neuro doesn't suspect anything outside of the medication, then I'd have to stop taking the Midodrine. NOOOOOO!!!!! That's the first thing that has finally worked for me! Anyone else ever experience this?