Angelika_23

I have been diagnosed with Fibromyalgia (it's in my signature) and I have seen a rheumatologist at Cleveland Clinic once. She wants to throw more drugs at me, and the risks with some of the newer ones scare me. I am not sure I'm willing to trade less pain for the possibility of developing cancer in the future... I thought I read somewhere that Fibromyalgia presents on both sides, not just one? I would really like to hear from you that have one sided fibromyalgia. It feels like very deep muscle pain that nothing will touch. I was about to break out the vicoden but it has started easing some. I am still sore, and limping on the left side when I first get up. My husband sent me a "cookie bouquet" today at work. The card simply said, "I love you". Isn't he wonderful? Thanks for all your support, everyone. Angela

Thanks everyone. I made the effort to go to work today, still feeling badly but still better than yesterday. I should have stayed home. Can you say HOSTILE ENVIRONMENT??? Apparently my coworkers don't appreciate it when I'm off, and I got an earful today. They were very mean about it. I guess they think I'm faking. I was so upset I was shaking, then I went and cried. I hate that. At least they didn't see me cry... Rats, what a bad day.

Hello, I am so miserable I don't know what to do. I'm in so much left sided pain it is making me crazy. My chest has been hurting too, and I wake up forcibly with a rapid heart rate. Now I'm afraid to go to sleep. Which doesn't help. The left side of my body, from my face down to my calf, is HURTING. My arms and legs on the left side are darker in color than the right side. I'm having dizzy spells. The list goes on and on. I think I was out of bed maybe an hour today total. No doctor around here seems to be able to help me. I have an appointment at CC at the end of May, and I'm on the cancellation list, but that is so far away and I'm hurting so badly. I know you've all heard this before, and I am grateful for you being here and listening once again. Angela

Carinara, As you should know, we are all different, therefore reacting differently to individual situations. My HR does not always come down when I lie down because of my IST. It is not because of anxiety. Sometimes I have to have medical intervention to bring it down. Angela

Not necessarily, I have POTS AND IST. My HR doesn't always go back down when I lie down... Just a thought, Angela

Hello again, I was diagnosed with IST at Cleveland Clinic, along with POTS, and the doc at Vanderbilt agreed. My HR stays high even lying down and I guess that aggravated my POTS. Now on the BB, the HR does still increase the 30 bpm upon sitting and standing, but it doesn't start out at 120 and go to 160 or so like it used to. Well, not much anyway. Try to get rest and hopefully you'll get some treatment soon.

Hello and Welcome! It is interesting to hear someone present very similarly to the way I did at first. Intermittent bouts of tachycardia, tachycardia while lying down, pain with breathing... Do you get sharp pains in your back by your shoulder blade, too? While my POTS was initially intermittent, it did finally come to stay. Hopefully you can avoid that with treatment sooner than later. I have been diagnosed with POTS AND Inappropriate Sinus Tachycardia. The beta blocker, once they found the right one, was helpful. I don't know what advice to offer regarding testing, but I do hope you get the help you need. Angela

I take Klonopin as well as Toprol XL. I don't seem to have any problems. Good luck! Angela

Thanks for the replies. You are getting me through this day. I will try to answer everyone... I have been at my job ten years. I am in HR. I actually administer the leaves of absence for all our employees. Yes, I have been using intermittent FMLA. FMLA protects your job for 12 weeks. However, if my absences are causing an undue hardship, and there is no end in sight, they can (and will) replace me. I'm not going to fight it. It is ultimately for the best. I did drop from full time to part time, that didn't help too much. As Sophia said, I have been hanging by my fingers way too long. I am a wife, and a mother of three active boys, and haven't the energy to devote to anything. My family deserves better, and so do I. So once the job officially ends, I plan to work on getting myself together before anything else. I have an appointment at CC in May with a new doctor. Jan, what I meant about "for everyone else and not for me", I was saying that I have a husband and three kids who are very active that I try to do everything I can with and for them, and I also take great pride in my job, and strive to do my best, and so I give a lot to that as well, and at the end of the day there is nothing left for me except chest pain, tachycardia and near syncope. And that weird left sided stuff. Most days I end up in bed sooner than later, and no one wins. We are lucky that my husband has insurance coverage. Mine is/was better, but his is still much better than nothing. Thank you so much everyone for the kind thoughts and words. You all mean so much to me. Angela

I am upset today. It's official. I am losing my job due to my illess. I am an HR person, so I know the ins and outs of FMLA. This is happening, and FMLA won't stop it. It did delay it for a time. I understand completely why it has to be done, but it still doesn't take the sting away. The company is being very nice about it, and I will still work for a short time to tidy things up, and help train the new person. The new healthy person who can work a 40 hour workweek and not miss days at a time. Just seems like this illness takes so much away. I used to be a dancer. Not anymore. Now this, among other things. Little pieces here and there are missing now. This is probably for the best. Now I can stop killing myself, trying to be everything to everyone, and start concentrating on my own health and wellbeing. I know some of you are in a lot worse situations than me, and I'm sorry if I sound selfish or whiny. I'm just upset and NO ONE understands except you guys. Thanks for letting me vent Angela

I'm just reading this, but bear with me... Zantac is a GERD drug, not an allergy drug. You are taking this for allergy, hives? My son takes it twice a day for his acid reflux. Did you possibly mean Zyrtec? Sorry, I'm just confused, Angela

So far I've had the generic Par version, and hadn't actually heard about the recall until I saw the post. I hope my pharmacy can keep it in stock. Atenolol does not work for me, I had it early on in my POTS adventure.

Yay!!!

I cannot believe this. This is the 4th time I've been ill with a respiratory thing in the past 2 mos. I've had at least 2 stomach bugs as well. I catch every virus that comes by. Every time I'm sick I start with classic POTS symptoms, tachy, chest pain, etc. I need to figure out why my immune system is not doing it's job. It isn't helping that the air flow in my work building isn't good, our area actually has no air flow unless the A/C is on. Which it isn't because it is cold outside. So the air is a stagnant cesspool of germs that isn't being circulated. I actually went to a medical supply store and bought some of the paper masks to wear over your mouth in the hope that if I wear those at work, I might stop picking stuff up. So I'm wondering how long my body can keep up with this onslaught of illness. And I'm wondering how to get help figuring out what is causing this. My cardio says, "Don't know what to tell you..." Aaaaaargh Angela

Do you take the Toprol for tachycardia? I am both Toprol and Midodrine. I can't function without Toprol. Midodrine is not a beta blocker and I am told it helps your vessels to restrict, but it does not slow down my heart rate (for me, anyway). Good Luck, Angela

Was this for the autonomic dysfunction center at CC? Or did you make an appt with a specific doctor and they ordered these tests? I am thinking about going to CC, and wondering if this is something I should expect as well... Thanks, Angela

Wow guys, thanks! I'm not sure... I usually have pain all over my whole left side, arms. legs, etc. Not just the flushing. Over last weekend, my whole left arm actually turned a purple bluish color. When exercising, I turn uniformly red. This left sided stuff only happens about once a month for about a week at a time. I can't seem to figure out what triggers it. Thanks again everyone! Angela

I am working part time, 32.5 hours per week. I have asked to do "job sharing" to cut my hours down even further, to 20 a week, but they don't seem open to that. I'm kind of wondering if they are waiting for my FMLA to run out... I have heard it is really hard to get disability if you have a POTS diagnosis. I also have fibromyalgia and chiari diagnoses, but I don't know if that would help. Plus, don't you have to be actually unemployed before you can apply for it? This is a hard place for me to be. I keep getting sick, I don't know how to stop it. My work is piling up, my co-workers are resentful, and I don't have much left over for my family. When I try to do more for the family, I over-extend and get sick. It is a no-win situation. Angela

Maxine, I am actually an HR Coordinator for our company, so I am up to speed on FMLA. I am just so frustrated because I KNOW I get so sick so easily, and that stupid attendance policy encourages people to come to work sick. Even if FMLA covers me, it doesn't give me back the time spent away from my kids or husband, and it doesn't give me back time to get my increasing load of backed up work done. I feel like the longer I work, the worse off I am healthwise. I am giving all my good energy to this job, and it's not enough. I was hoping this was just a "phase" my body is going through, but it is sure lasting a long time.

I have had about three months of being ill with one thing or another. Today I went to the doctor and they suspect pneumonia. My work is not happy about me missing so much, but I can't help it. People keep coming to work sick thanks to the new attendance policy, and I inevitably get what they have. I have had two or three bouts of stomach flu, this wonderful possible pneumonia, possible salmonella, colds... Probably more but I can't remember. I don't know why I keep getting sick over and over. I take vitamins. I drink orange juice. I eat reasonably well. I wear my coat. Does anyone else have this problem??? Frustrated- Angela

When I stumbled into the bathroom this morning, I found that the left side of my face was bright red and hot to the touch. My husband noticed that my left arm was purplish, but my right arm was normal. I am tachy, and I have fallen twice since getting up. I have chest pain. Argh! I have had left sided issues for a while now, they have labeled it as fibromyalgia. But they can't tell me why it is only on my left side. And I never have the fantastic coloration when I am at the doctor. Well, whatever it is, it is causing my POTS to come out with a vengeance. Angela

I get "sunburn skin" with steroids. My skin isn't flushed or anything, but I can't be touched because it hurts like the worst sunburn I've ever had. Even wearing clothes hurts. Does anyone else react like this? Angela

Hi, I take Zyrtec but it doesn't make me tachy. However, Allegra does. Isn't that odd? I was told not to take the "D" in either of them. You aren't taking Zyrtec-D are you? That just might make you tachy... Angela

Went to the doctor. They said to wait until Friday, and if I'm not better to go get some labwork done. They were obviously not concerned about me getting dehydrated, didn't even check. I have been drinking G2, that's all I have here besides Ginger Ale which helps calm my stomach. Thanks for the thoughts, and I hope everyone feels better!

I am feeling awful. I became violently ill on Friday night, was doubled over with stomach cramps and had diarrhea. On Saturday, was still feeling bad, then started with the POTSy stuff, dizziness, etc. I haven't been out of bed since Saturday afternoon. I have had diarrhea through last night. This morning, nothing so far. But I haven't eaten, either. At first, I was concerned about a possible C-diff infection since I just got off the Z-pack about a week ago. Then, this morning on the news they were talking about a salmonella outbreak in foods that contain peanut butter (not commercial peanut butter in jars though). We buy those little packages of cheese peanut butter crackers in bulk, and eat them for snacks. I ate a lot of them last week at work, one pack a day, (stress eating), and now am wondering if I might have salmonella. I checked the web for the brand I have, and yep, they are one of the brands being pulled off shelves. I am really concerned about getting dehydrated, I get that way so quickly. My POTS stuff is acting up because my body is under asssault. Has anyone here had any experience like this? If so, how did you fix it? I have got to get my body out of this tailspin. Any advice is appreciated. Thanks! Angela