songcanary

I agree with everyone else. Take it slow. And I mean slow to the point of ridiculous. When I was so physically weak, as you say you are now, I did not exercise at all. I waited until one day I felt like I could do just a little. That was after I had been on doxepin and salt/fluid loading for a few months. I walked with my husband just a few steps outside and we went back. It was kind of a big deal lol. It helped me to have someone there. Very gradually I was able to do more and more. We were just talking about this at dinner tonight. Last year at this time I could not have imagined being as active as I am today. BTW, I think others' advice about exercising while recumbent is really good. I wish I had done that to begin with.

I have found yoga to be the most beneficial for me. I agree with Cath UK that it's important to find a good place. I started out slow with gentle yoga 3x's a week and gradually felt well enough to finish an hour of the regular class, also 3x's. This took me about six months to achieve. It was kind of a step forward/step back process, so don't be surprised if you need to back off sometimes. I did that many times but eventually I found what works for me.

Hi Steven, Welcome to the forum. You have come to such a safe place! I remember well the feeling of white knuckle terror before I got diagnosed. So many seemingly unrelated symptoms coming from who knows where. I am actually still undergoing testing but have been pretty stable for months. Glad to hear that you are seeing a POTS specialist soon. Hopefully this will be helpful and you can put some pieces together and get relief. This forum has so many knowledgeable people with lots of experience-I love them all. I hope you feel better soon!

I have been tested positive for milk, soy, eggs, wheat, rice, beef, chicken, turkey, pork, fish, kidney beans, chocolate, almonds and tomato. I have reactions to many other foods that have not yet been tested. It is a living ****. I take oral food drops for 11 foods which helps to reduce the reactions but I still get hives. I would literally kiss the feet of someone who could tell me WHY I am so sensitive.

I have had three medical massages and there is no question in my mind that they have improved blood flow to my head. I decided to do this because during PT for fibromyalgia the trainer found extremely tense neck muscles (no big surprise) and his treatments really made me feel better to the point that my head felt clearer. So I followed up with the medical massages and I haven't felt lightheaded since I started them. He also told me that sometimes insurance will cover so they will fill out a form if you bring in an Rx from your doctor.

I know what you mean, I'm the same way. If I had a nickel for every med failure... So what are your reactions? If they are true allergy related, I arm myself with Pepcid or Benedryl and they will stop a reaction pretty well. If it's nausea Pepcid works well for that, too. I've also had flushing and tachycardia from some meds and again Pepcid to the rescue or I just wait it out. It's a tough situation but I hope you can find something that helps you.

Oh, how could I forget about the cold extremities and constipation? I had those, too LOL. Before treatment, my body temp was as low as 94.0. I was visibly shaking most of the time. If you seek out a more holistic physician or even a more old fashioned one, you will find that they are more inclined to treat symptoms rather than numbers. It took me three years to find one so don't give up. They are out there. Try googling doctors who prescribe Armour thyroid. There is a list of them on the Armour website; it could be a place to start. I initially saw an alternative physician on the advice of a friend. She was the one who diagnosed the hypothyroidism with a low FT3, but she was not in my insurance network so I eventually found doctors who are. It has been totally worth the agonizing process because the Armour really helps me and I probably needed it for many years before I finally got it.

Hi Lissy, Are you symptomatic? My TSH was 1.5 and still I had major hair loss, crushing fatigue and dry skin. The free T3 is the more important number. If you have symptoms it would be worth checking. If not, then the number is probably normal for you. But I sure would keep an eye on it.

I completely agree with Sandyshell. In my case, stress is THE trigger. The two times this year when I relapsed bad were both during times of high stress. My EP concurs. Proper breathing is so important, and we as a society are shallow breathers. So it must be learned. I'm no expert, but since starting yoga I have become much better at this and it does help. Good, deep breathing is scientifically proven to reduce cortisol levels. That really keeps me motivated.

It sounds like you might be pushing yourself a little too much when you are feeling better. This has happened to me many times. I had to learn how to prioritize my activities and really learn where my limits are. In my case, I was such an overachiever that learning to pace myself was really hard. But I did it and now I am so much better. Maybe just give yourself some down time and then take a critical look at your activities. If you need to keep the job, then do so. But lessen your other stuff so that you give your body time to rest. It needs more than we think, especially when we overdo!

Yes, it is an interesting article. And I agree that every little bit helps, thanks for posting. Wishing your son better days ahead!

I don't know, but I was able to tolerate it. And I have soooo many allergies. I hope it works for you!

I felt like that before I was diagnosed with hypothyroidism. My TSH was perfectly normal but the FT3 was low. I had to change doctors before anyone would listen to me. Once I got treatment the 3 hour naps went away, thank goodness.

Three long hard years after nausea and dramatic weight loss. After talking with my rheumatologist, it was obvious that I had dysautonomia my whole life, but symptoms were intermittent and I just had to deal with them. Things took a turn for the worse during perimenopause.

Sulfa drugs give me hives & itching. Tetracycline, Terramycin and Augmentin cause really bad nausea. One of my doctors said 'we're running out of options here!'. No kidding. I dread antibiotics.

How about a little nitrous oxide? I got it all the time when I was a kid. I don't know if it applies to your procedure (or even if it's used anymore) but it made the whole world look rosy to me for awhile Your dentist would probably have great options. I mean, practically everybody who comes in there is scared to death! They're used to it.

I try not to make gross exaggerations but I can honestly say that Armour thyroid has saved my life. My current GP told me that some people just don't convert T4 to T3 well, and I am probably one of those people. It took about a month to notice a difference and I continued to feel better each day for about six months. I have been taking it for 1 1/2 years. I would consider myself in remission at this point. I must add that two months ago I started Florinef and LDN, and now I feel totally normal. So I think the triple combo is good for me. I just wake up each day and cross my fingers! I get the Armour from my allergist who is an MD, but my GP told me he would also prescribe it. It took me years to find a GP like that.

Katybug, That is a great description. I have felt the same way but never said it like you did. Dani, I hope you feel better soon

I remember dark times as well. I felt helpless and hopeless for three years. Please re-read Enko's comments. She is one smart cookie.

Naomi, I have the same questions about SFN, so can't help there. But thanks for the chart. It's awesome!

I lost 10 lbs rapidly without trying when I first got sick. After a year, I started gradually gaining it back, and now I have done that and then some. Plus, I just started Florinef and I am gaining a little from that as well.

Hi Futurehope, Thanks for the thanks! I had the same reaction when a dear friend tipped me off about T3 and thyroid meds in general. I was so grateful. I was really in bad shape before the Armour and it had gone on so long that I had lost about half my hair. Not to mention all the other stuff. Like Sue says, it doesn't work for everybody, but I remember the first day I took it like it was a birthday present! I hope some T3 helps you. So many endos are stubborn mules about this for reasons I won't even get into right now.

I agree with Maiysa. I had low ferritin as well, but my serum iron was perfectly normal. I was symptomatic with nail ridges, hair loss, fatigue etc. The body will just keep drawing from the iron stores until they are depleted. That is why the serum iron looks normal. I had to see a different doctor to diagnose it because my primary was just going by the serum iron reading. Thank God for my allergist. He GETS it!

I take Armour thyroid. I wouldn't even consider a T4 only med because my TSH was dead on normal and FT4 as well. However, I was symptomatic and my FT3 was low; still WNL, but low. My doctor said that I am probably just one of those people who doesn't convert well. This med brought me out of a gutter of ****. I have had high cortisol readings for four years and who knows how high before that . Cortisol can wreak havoc with the body and I wouldn't be surprised if it could affect thyroid function, too. Maybe try a T3 med just to see if it helps? I love my Armour.

Sending big (((hugs))) your way! I hope that this bad time is short lived and you are back on your feet soon. It is a cruel disease to say the least and is like riding a big roller coaster. And I HATE roller coasters! But at least it finally comes to a stop and I hope yours does, too.