Nymph

Thanks for the potassium recommendation. I have twitching at times. The cell phone vibrating in the chest.... yes! Or sometimes it feels like an engine revving. So weird. And I have the jaw spasms, too, despite taking extra magnesium.

I don't know your situation, so it's hard to give advice. I decided to disclose for my student teaching position that starts in January, because I need my cooperating teacher to work with me on things, and so I can have the flexibility to do what I need to do. I don't know yet if anything I'm doing is a good idea.... just trial and error here! Good luck whatever you decide to do.

You can also get salt tablets that you swallow, and these allow for a diet that does not depend on processed foods.

For softer-feeling compression, look for microfiber. I have also seen cotton tights on some sites. Can't remember where. I would worry that they would lose their compression quickly, though.

Good luck!

Interesting. I definitely become symptomatic after walking when I'm standing still. And now that I am pumping tons of salt into my system and wearing compression hose daily I am not having bp/tachy issues often at all. (Compression alone raises my bp 10-15 pts systolic and 5 pts diastolic.) Yet some days I am still symptomatic - particularly brain fog, shaky legs, and dizziness now more than lightheadedness. But I also have Sjogren's so it's not always easy to tease out what is what.

Fantastic news! How long has he been taking LDN? I just started it last night.

Since you have had joint pain in multiple joints for more than 6 weeks, I think it would be helpful if you'd see a rheumatologist. They are the experts at diagnosing things. I think a blood test cannot rule out RA. There are also lots of other things that can cause these problems. It is worth getting an expert opinion and full work-up as soon as possible because some conditions can cause permanent damage, and many have a better course if they're treated early. You're conditions seem to line up with many autoimmune diseases. Diagnosis can often take some time, but a good rheumatologist will initiate appropriate treatment even if he does not know which one it is exactly yet. Good luck!

Hmmm..... well, ANA and rheumatoid factor are fairly common in the general population, but that doesn't stop them from being part of the puzzle in autoimmune diagnosis and research. Autoantibodies are one part of the complex process of autoimmunity, and much in unknown. It certainly does not seem like a reason to "write off the research" - particularly at this early stage.

My doctor just prescribed this on a trial basis for me. I am trying Adderal first. Thanks for the information! I hope that it continues to help Tyler.

Yes, I think I have something similar to what you're talking about. Once in awhile I will feel my heart speed up quickly and breifly, like an engine revving. It feels like a vibration. Mine has not been very frequent of lasted more than a few seconds at a time, although I have another sensation that is a fluttering feeling that lasts longer.

Yes, I think that your "truth hierarchy" is exactly what it is. I offers you freedom do disclose or withhold, while avoiding bitterness, for the most part, as you learn to accept people for who they are at this moment, and define your relationship from there. Good thoughts here!

Hi Sylvie,

This is a very difficult aspect of chronic illness. The answer is not simple, either, and probably each person will deal with it slightly differently.

I only talk about my health issues with certain people - some close family, some friends. I have started to talk about it at school and work in a professional context, as needed. I share the minimum amount of information that I need to clarify my limitations or choices.

And here on Dinet, in my Sjogren's group, in my local support group, I can say whatever I need or want to, to people who get it. I am thankful that I also have those family members and close friends who get it. Not everyone has that. Other people can think what they will and I am not going to try to manage that. No energy for that ****.

Once in a while I will post something educational or interesting on social media about my health issues. I try not to do that very often as I don't want that to become my identity. It is a way to educate people that is a little easier than a direct conversation.

I know it's a new world, and a strange one! But you're not alone here.

Thanks!

I can drink a little (1/2 drink) if I am not having having POTS symptoms at the time. If I am symptomatic, it will make it much worse - palpitations in the night - worse the next day. If I am feeling well going into it I sleep better and thus feel better the next day. But I don't drink beer (gluten). I'm partial to a good single-malt, or an occasional glass of wine, although red wine can set off problems for me, and I don't like white as much.

kJay, what are the shoes with the rocker bottoms? I'm not familiar with those.

Thanks for your input, Dancer! On of my personal struggles is organization. I know that it would help me so much, so trying to grow in that area.

Your chat-time before class is a great idea. My cooperating teacher in my practicum last year had a similar strategy. Only with teens, he would ask them a specific question as a class - something they would be interested in. It set a good mood for the class.

Well, I hear you! I question my decision to teach on a regular basis. Right now I am starting three grad history courses and feel like I may not make it. I have to ask myself, if I can't do this, why do I think I can teach? It's a question without an easy answer. On the other hand, it's not something I feel I can just give up on without trying. So, yes, I should use some of these tips for myself! I am thinking of asking my doc for a disabled tag to use on campus, where parking is a nightmare.

Good luck! I know it's a big move to talk to the principal but it may be for the best. Other thoughts are:

- Ask for an occupational therapy referral from your doc. Say that you are unsure about your ability to keep doing your job, but you would like to for as long as possible. An occupational therapist can tailor recommendations for your needs and job specifics.

- If you have a TA, don't be afraid to use her. Let your grade team know about your struggles, identify the parts of the day that drain the most of your energy, and get help during those times.

- Consider a mobility scooter or wheelchair. I know that's a big step, too. But all that standing/sitting/moving around can really stress our systems. Plus the kids would love it.

I would also like to hear about this topic. I am a preservice teacher (high school) and worked as a TA in second grade last year. I worked helf-time so that was a big help! It is very challenging. I sat down whenever possible, which was most of the time as my primary responsibility was tutoring.

Practicing energy conservation in every aspect of life can help. Here are a couple of resources I found:

http://www.bfwh.nhs.uk/visiting/patleaflets/leaflets/BFWH151%20%20-%20Occupational%20Therapy%20ENERGY%20CONSERVATION%20BOOKLET%20(v7).pdf

http://occupational-therapy.advanceweb.com/Article/Energy-Conservation-1.aspx

There are a few other teachers here. Hopefully they will join in. There was some discussion of this on a careers poll awhile back, if you want to search for it.

How long have you been on the new medicine, and have you discussed this side-effect with your doc? Maybe there is an alternative.

Currently I am in the process of asking for accommodations for my student teaching next spring. I am a little scared to do it, but I know that demands on teachers can quickly spiral out of control. Thus I feel the need to state my limitations up front so that I can work within them.

When does your school year start?

I'm the opposite. I am rarely short of breath, but sometimes I have reall low O2 readings, like 88, 89. That only seems to happen at the doctor, though. I have a little pulse oximeter at home and it's always normal. Weird. This is an interesting discussion, though.

I hope that you find answers soon!

Thanks. I will keep that in mind!

Prov 31mom,

I am sure you will be able to find the work you need online eventually, as special ed is is such high demand and there is, unfortunately, such a booming population with autism.

It sounds like your diagnosis was quite recent and symptom onset sudden. A couple of things make me think that you possibly have an autoimmune basis to your symptoms: sig weight loss, low-grade fever, endo (very high rate with autoimmune diseases), D-deficiency, pre-diabetes. Have you been worked up for lupus? Ankylosing spondylitis (spine arthritis)? These are just some thoughts I had when I read your profile.

That has got to be extremely stressful being the main support for your family. Have you applied for disability? I hope that you are able to get some help so that you can concentrate on stabilizing your health for the long-term. Hugs!

Yes, absolutely. However, the gasping for air thing only happen occasionally.

I kind of wonder about this for myself. I have not done a sleep study, but sometimes I dream that I'm drowning and wake up gasping for air with heart racing. Is that what it's like for you?

Hi Katy and all,

This is a very important thread. In fact I was just talking about this to a new member on my Sjogren's group.

Some things I've learned:

1) Don't push through those first days of a flare. Just do nothing. It'll make it better sooner.

2) If you can choose between something you love and makes you happy (swimming) that takes a little more time out of other responsibilities, and something that just gets the job done (rowing machine), always go with the thing you love

3) You don't have to live on a "normal" life schedule. So what if I'm still single and just developing my career at 36? When I am tempted to see myself as a failure, I have to look back and see the value in everything I've done and been through, even the time spent slogging through my health issues.

4) If you need to lie down, just lie down.

5) Confess your shortcomings and then let go of the guilt. It doesn't do a thing for anyone.