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OK ... I must be going crazy


calypso
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I am literally feeling like every single system in my body is failing right now, and I -- and my team of four doctors now -- hasn't even a clue as to what's going on. In addition to developing typical POTS symptoms over the course of a week or so in December, I have also developed severe weakness/muscle loss, have had significant weight loss (as in I lost all of my pregnancy weight in four months plus six more pounds, and I was on the thin side to begin with), am now having lymph node swelling all over my body, swelling, constant sweating, and a horrible dry mouth that will not quit. I am becoming more concerned about the loss of muscle and weight loss than the POTS. I feel like I'm wasting away, and I am so scared. One of my doctors has even suggested that this is all some sort of postpartum conversion disorder and that I'm harboring a fear of being a mother.

I know anxiety and depression can be physical, and the mind is pretty powerful, but what do you guys think? I literally have no abnormalities in my bloodwork or ECGs. I even had a nerve & muscle function test that was normal. I don't know where to turn. I even am trying counseling, even though I seriously doubt that swelling and muscle loss can be psychological. Can this really be happening? I feel like I'm dying a slow death and I have no idea how to stop it. The only thing I'm waiting to be tested for is lupus, and that's happening on Monday. I just don't feel all this weakness and weight loss could be POTS or depression/anxiety alone. Can it?

Also, I tried Zoloft for a month in January and it did nothing. Clonazepam provides very little relief.

Amy

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Have you ever been on steriods? Have you thought about Adrenal Insufficency?

An Endocrinologist would work you up for this. If you can't get an appt. then have a cortisol and ACTH test done and go from there.

Glad you are going to be worked up for lupus, that was my other thought.

Have you seen a neurologist, maybe a MRI is needed too????

Karen M.

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Guest Julia59

I had a lot of muscle waste early on in the worst phase of my POTS. My legs got really really thin. My legs have always been muscular because of all the gymnastics I have done over the years in addition to dancing. then to see them waste away was very very creepy.

It scared the daylights out of me. Now my muscles are back---plus a little fat ;)

I had lost 25 punds in about 6 weeks. Now my weight is back--plus a little more then I wanted. But I seem to do much better symptom wise with a little weight on.

Take Care,

Julie :0)

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When I first got sick with pots I gained a bit of weight and then in the course of a month I must have dropped 20 lbs. I wasn't doing anything differently and it also scared me at the time. I'm also pretty skinny. Eventually I found that my weight evened out a bit (although I'm still skinny)

Hope it gets better for you.

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sorry you feel bad. you are not crazy.monday i was sent for a cat scan because like you my lymph nodes are swelled. i was just resently diognosed with ncs on 1-20-04.i had a large weight loss too .i feel horrible all the time.noone has mentioned lupus to me please let me know how everything turns out .thanks .feel better

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I think all of these symptoms sound like things that can happen with POTS. It's not just a rapid heart rate upon standing- there are so many other things that go on, although it never hurts to get things checked out. BUT don't let the doctors tell you that its all in your mind if its not, because YOU know deep down what is really going on. I personally have most of the same symptoms on a regular basis- muscle weakness, weight loss (lost 80 lbs of pregnancy weight PLUS 5 lbs in a six month time period and can't gain a pound no matter what I eat), major lymph node swelling, major sweating, and excessive thirst/dry mouth.

Are you exercising as much as you can tolerate? Drinking plenty of fluids, including electrolyte drinks? Eating a balanced diet? Seeing a doctor who is knowledgeable about POTS? Just a few things to consider...but in the meantime, try to stay relaxed and focus your energies on getting well, and I hope you feel better soon!!

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Karen - I have not been on steroids before, but from what I've heard, I feel like I have. My doctor told me he doesn't think it's adrenal insufficiency because my blood pressure is not low (actually, it's slightly high), and he thinks it can't be Cushing's because I would gain, not lose weight. I did see a neurologist and he did a nerve/EMG test and it was perfect. He is considering an MRI for no good reason other than to see what he can find, but I am hesitant to expose myself to more radiation. I just read that every time you have an x-ray or CT scan, your risk of cancer later in life increases a lot more. If I continue to waste away, though, I guess I won't have much choice.

Jessica, thanks for the reassurance. I am sad, though, to hear you have suffered the same horrible symptoms. It is terrifying to see your muscles disappear even when you exercise and eat well. Yes, I am doing both, and drinking plenty of H20. It's so strange - I had to pour a glass of wine tonight from a bottle with one hand and couldn't lift it because my wrist/arm muscles were too weak. What in the heck causes the muscle atrophy? And what causes all the lymph nodes to fill? I have hundreds of them all over my chest, stomach, underarms, even my legs - I didn't even know they were there until they all filled up a couple months ago.

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Amy, I'm not sure what's going on with you, but don't give up on looking for an answer and/or treatment. Just wanted to add my moral support for you as I don't feel I've got much more to offer your given circumstance ;)

Try to hang in there and keep pushing on ... ;) Nina

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Amy, I had many of the symptoms you have when I was at my worst. I lost fifty pounds over six months. That was one of my first symptoms. The muscle weakness was one of the worst symptoms. I was put on florinef and midodrine and between the two of them I stopped losing weight, and put some back on. It took me a good three months to get back my muscles and stamina. I exercised as much as I could each day. I don't understand either what happened to my body, but I think it was the florinef that helped stop the downward spiral for me. I still get the dry mouth, but the sweating has almost stopped.

About the MRI, I don't think it uses radiation. I think it uses a different type of technology to get the images. I had several MRIs to eliminate things that might be causing the symptoms I was having. As far as I can remember, MRIs cause no biological damage.

Hang in there. You should start to feel better soon. Try to take care of yourself as best you can. It's almost impossible with a baby, but let the housework go and take a nap. Deb

P.S. I forgot to add that I was told I was having panic attacks/anxiety attacks. I know that wasn't it, and fortunatly my husband or my best friend was with me each time I was taken to the emergency room and they both insisted along with me that the attacks were NOT due to panic or anxiety. I think that helped the ER docs to look for something else after about the third or fourth time. I knew that it couldn't be all in my mind, and I'm sure it's not all in your mind either.

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It is very unlikely that this is all in your mind. My post partum period was ****, pure and simple. When did you deliver? The body has a lot of changes to make and if you are suffering from POTS it is much harder. Weakness and weight loss are common with POTS. I had a lot of weakness for months after my daughter was born.

Autoimmune diseases can crop up following pregnancy, so I think the advice to see an endocrinologist makes a lot of sense.

Do you have family or friends nearby to help with the baby so that you can have extra time to rest? Try to keep the fluids and salt going--even more so if you are breastfeeding.

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Amy, Lots of good advice here. Don't let the doctors push the conversion disorder nonsense on you. I went through the same thing. I was initially diagnosed with panic/ anxiety and conversion disorder. My neurologist blamed my ataxic gait on a conversion. I actually believed it. Don't let that happen to you. When my depression cleared up, my muscular problems got worse. Then I knew it was not a conversion. But I could not convince her. My first EMG was normal. I ahd one two years later by a doctor who knew what he was doing and it was abnormal. Proving the conversion diagnosis wrong.

Don't worry...your EMG was probably done right. It sounds like muscle wasting and weakness are common in the beginning of POTS. I am an unusual case where my POTS is caused by a neuromuscular disease. My point is that you need to trust yourself and follow your heart. You know your body. If you are not comfortable with the answers that you are given...keep looking.

Best Wishes,

dawn

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I went to the rheumatologist today for my autoimmune disease evaluation, and he said that although I have something weird going on, he feels pretty strongly that it's not lupus or Sjogren's or anything autoimmune. He didn't know much about POTS but thought that in theory, if you blow out your autonomic nervous system, it will make you lose muscle and weight, as well as cause weakness.

So that was good news, but again I don't know what else to do to stop this weight and muscle loss. I am eating so much, and I am exercising plus lifting weights to try and maintain the little muscle I have left. I have decided I will try acupuncture this week, too, figuring it can't hurt. I can't take Florinef or Midodrine b/c my problem is actually high blood pressure, but I am drinking lots of water because I figure that can't hurt either.

Thanks for everyone's support; this is a really odd illness and I am still convinced it's got to get better over time.

Amy

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I was told not to drink any alcohol and I have avoided most caffeine except for a little ice tea in the middle of the day. This is not a made up illness--it is real. It's just that some doctors don't want to admit they don't know everything. I also lost about 25 pounds initially, now I wish I could take off 15. Oh well. I had three MRI's because they were so convinced I had MS. It doesn't hurt and gives you peace of mind.

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