laila

Ok, my legs are killing me. I have noticed alot of people's site list pain meds, is this for leg pain? My arms feel achy at night, but the legs are the killers. My feet also feel like I've been walking on hot sand and tingly and swollen, I can not find a comfy shoe. The only shoes I ever had that didn't make my feet and legs worse were slip on flip flop types that were so old I looked like a freak, and if I even got near a drop of water i would almost slip, had many major oopsies. One day I tripped over something I don't even know what and fell on my front stoop with a big scraped knee, big boo boo. Big crybaby. They finally fell apart and got trashed now the only thing I can wear out is old slip on sketchers, even slippers around the house don't help much. Guess its another question for the doc. I do have tramadol which I find myself taking more and more, Just one pill at night, though. Just curious as to what pain others have. I did do some gardening and weeding yesterday and today and cleaned tub and shower last week, so that probly set it off. Dx with Chronic Fatigue and Fibromyalgia before pots.

Ok what does pm mean. I need the computers for dummies book. And how do you get to the picture website. I used to be a real estate assistant but I don't know much about basic computer stuff.

I have the wrong foot size, but what are they? I have some type of neuropothy in my feet and can barly stand to have slippers on. I guess I need to check on this problem again.

Just a note about Claritin. I bought it otc last year and me and my 14 year old daughter took it one night and I remember feeling really awful on it, can't remember what though! And my daughter woke up the next day and her legs were so stiff she could barely walk! I was ready to take her to the doctor then read in my pill manuel that it can cause muscle stiffness as a side effect. So I sent her to school with instructions to call me if it didn't get better, which she said after a couple hours it did. I do ok on Zyrtec, that is prescription only. I am highly sensative to meds too.

About the heavy bleeding, you may want to get a second opinion. When I was 42 I was having really really bad periods with huge clots (YUCK) it was so bad. One doctor said it was a normal part of perimeonopause. Then I finally saw another doctor who could feel fibroids, and sent me to a gyn doc who did a sonogram and said I needed an hysterectomy and was anemic. Mine were on the inside and outside of the uterus, so they couldn't do any kind of laproscopic procedure. There can be various types of problems that cause heavy bleeding. Especially if you are running to the bathroom every ten minutes. Even if you are not that old things can happen. I'm not trying to scare anyone, but once again, sometimes it pays to get a 2nd opinion if you know something is not right! Good luck.

You sound like you need to get to the doctor pronto. Doesn't seem to me like it's working. I always do good on Biaxin, I get frequent sinus infections and to tell the truth I always feel good on it. That's a whole other story. Though I cannot take z-pak, which is in the same family of drugs. You do have to make sure you have a lot of food in your stomach for the first dose or you will feel nauseous, but otherwise it makes my xanax work better and I always feel almost normal on it. well almost. I cannot tolerate many antibiotics.This has been an issue I have been dealing with for years with different doctors. So we'll see how it goes with my new best doc. Lately I have been having all kinds of eye problems, pink eye in February and now itchy eyes, the doc took a sample of my eye secretion and switched to an antibiotic drop from the allergie drops i just paid 35$ for last week! Do eye problems signify some other disease? Please go to your doc before you end up on iv antibiotics, you sound like you need to go now!

If you don't mind me asking, where do you live? I live in Bowie, MD. I was thinkging it would be nice to try to get together for a "fun support group" with people. But then maybe nobody would be able to make it! At least we would understand why. Yes this forum is a godsend. I don't feel all alone with the freaky problems anymore. I don't seem to have many friends anymore, and it's hard for people to understand. Good luck!

Thank you everyone for your inputs. I always feel better when I take the antibiotic Biaxin. It makes xanax stay in your system longer. Which helps so much with the shaking. I am back to trying the Midodrine, just two a day and I can also sleep. If you look it up on a web site the Midodrine can cause nervousness and anxiety. Which I am also being treated for with Xanax. Which could be part of the whole Pots mess, as before I was dx I knew it was something more than plain anxiety and panic. I have the worst morning symptoms. Anyway, its weird how some days I can deal with everyones drama and others I can't. I guess if I feel too sick to do anything it makes me more cranky too.

Hi,

I was recently put on Midodrine, 5mg, 3x day and have noticed that SOMETIMES it makes me feel really tense and irratable, yesterday I was snapping at everyone and felt this rage just coursing through me, at the slightest problem. I know it can cause anxiety and nervousness. I had also taken 1.5 mg of Lunesta, to help with the insomnia the Midodrine is causing and I woke up in a sweat and also happened to feel sick yesterday due to an oncoming sinus infection. I just found out Lunesta can make you depressed. Anyway I had a "B" day (bad day) spent most of day on the couch and felt weak and cruddy. Also my bottom blood pressure number now seems too high 90 to 100 on awakening, before midodrine. Could that be from the midodrine from the day before? I know this is too many questions. I started Biaxin for my sinuses and didn't take Midodrine today. I will bring this up with doc next week. I already feel better. And how low does your bp have to be to be considered bad enough to take Midodrine? Does it give you more energy? Last week I felt semi ok on it. Thanks for any help!

How long have you been on the lyrica. I took one dose of that one time and felt like in a drunken stupor till next afternoon. Just a thought. Feel better you poor thing. I had an awful stomach like virus that lasted 5 days and I never puked but felt nauseous and crampy and just wanted to sleep and could barely eat. I thought it was just another one of my epidsodes but then my daughter got it to a lesser degree.

Go to the Doctor now! or ER! Somethings like that just can't be put off. Please, please , please. Do you have an urgent care center near you. There is usually not as bad a wait as an ER.

I too had to "self diagnose" and somehow stumbled across this site. Have been having symtoms for 10 years or more and been dx with anxiety/panic disorder, chronic fatigue, and fibromyalgia. I saw 3 cardiologists (one being noted by a doctor as top in the state) and have been treated with xanax for my problems, which actually does help some. But I recently found a new primary care doc who immediately referred me to a cardiologist in the group who immediately knew what I was talking about! I had a tilt table less than 2 weeks later and POTS was confirmed. I too always just thought "something" was not quite right. So even though there may not me an easy cure, I am happy to have a diagnosis. I have all the symptoms you have. Plus more... My worst time is in the morning sometimes I shake for hours. My doctor took all the info I had printed from this site and is so very kind. Maybe an angel eventually leads us to some help.......I kept telling doctors I felt like I was floating on an inner tube in the ocean they just would helplessly or haphazardly try to refer me out.....I was going to a large HMO group that is so overworked. This is a smaller practice and they stress "working with patients". I guess I finally got my angel. Good Luck and never give up.

I was put on Lyrica for fibro pain, and after just one small dose I felt like I was staggering drunk till the next afternoon. I am very med sensative. However was just put on Midodrine and I am handling it so far, I am freezing cold with chills and weird tinglys on scalp but no heart racing or other nasty things.

That's a great idea, the broth! I have been trying to think of something with lots of salt besides chips! Thank you.

Wow it sounds like a roller coaster ride! Have you ever been tried on Midodrine. I justed started it and it seems ok, no horrible side effects. In fact, doc wants me to up dose as it is supposed to raise blood pressure after the initial rise in morning when my heart pounds like crazy. I finally understand that my heart is pounding to make sure that the blood gets to my brain and the raise in blood pressure then is normal. I feel so crappy I have to lie down for awhile. Then everything settles down and my blood pressure drops. Usually my heart rate would stay up but with the midodrine it too drops faster. Its only been a couple days so we will have to see. I just finllaly found a cardiologist after 10 years of this who knows about pots and is very interested in helping. He is nice. Hang in there, sounds like your on the right track.

Oh I guess the Tylex must be the UK version of something like percocet orTylenol with Codeine here in the US. You poor thing. I have a friend with bad back problems and she has been on morphine things that look like lollipops. She is very hyper and it didn't seem to slow her down at all. More energy than me of course!

I too have been dx with fibromyalgia, chronic fatigue, and pots, and my rheumatologist has been very helpful with pain and sleep issues...he first tried a muscle relaxant, flexeril, but it gave me weird nightmares and such, so then he gave me tramadol which I take prn for really achy legs. I usually take only one, and not everyday. I am also on xanax so I don't want to be "addicted" to to much but sometimes you gotta have relief. There are no pair of shoes or slippers I can even stand to have on my feet. You should look for a good rheumalogist or pain management doctor. If you have fibromyalgia that is necessary! As well as your other issues. Good Luck!

Go to this website "Robbie'e Recipes", just type that in the search bar and you will find it. Sorry I don't know how to cut and paste it here but you should find it. I have found a lot of neat stuff there. And other websites. You could even try typing in easy casseroles or crockpot recipes there are so many out there!

Well I feel exactly what you do and the last time was over a month, and then I woke up with panic/night sweats, a new addition to my symptoms. Usually I just wake up in a lovely panic of palpitions and shaking. But I am 47 and am definetly peri-menopausal. I am still being referred to a gyn for it. Your symptoms sound hormonal to me, just keep pushing till you get an answer. Let me know what they say! I haven't even had the energy this week to call the doctor then call for a referall. I cry everyday anyway, at the thought of anything emotional! I have quit smoking for the 2nd time in 2 years so that's probably part of it but jeez.... I am known to just break out in tears and grab the tissue. "There she goes again, Mom please stop", are some of my dear childrens' responses. Oh well. Good Luck! PS. There is something called premenstrual disphoric dysfunction or something like that that were it feels like your'e going crazy! I have at times felt like throwing all the dishes against the wall. Maybe I need something!

Good Luck! I just found a good primary care doctor and was referred to a cardiologist immediately in the group who knows of Dr. Grubb and Dr. Bell. Already had a tilt table within 2 weeks! I guess more and more doctors are finally catching on. I have suffered with cfs issues for 10 years. The test wasn't too bad, he used sublingual nitroglycerin and I didn't have much discomfort at all. I am not an extreme case, I guess. But that night me and my daughter both got a stomach bug and I still feel so weak and I have been crying alot. I can't stand being this "down". Yeah for all the great docs people are finding. Try not to worry!

OH, I have been sick so maybe that's making things worse? Some sort of stomach bug with real weakness and sleepiness.

My worst symtoms are in am, I wake up to intense shaking and tacky with high blood pressure. Would it be best to take the toprol at night or a.m. for this? I was just prescribed midodrine to take in early part of day, but now I am questioning whether or not it would help, as my Blood pressure is high more than low. Will check with Doc next week but I am leary of meds. THings have really been getting bad in the morning.

I also survived a test yesterday. It was done in the cath lab at Prince Georges County Hospital and my doctor was right there. The nurses were nice, had me lay flat for the 30 minutes, etc. Doctor was right there taking pulses and pressures along with the machines, and nurses. He actually yelled at the poor nurses and techs(outside the curtain) to be quiet as it was not in a dark room. I am normally on anxiety meds, but was told not to take any that am. I guess i had enough in my systom or I would have been shaking. He uses sub lingual nitro glycerin instead of that other stuff,.... I noticed a slight pounding of heart and yucky feeling but no major episode. Oh, first they tilted me to 30 degrees and I did feel hot, the nurse was like, well you don't feel hot, I said well I feel hot inside, then the doc walks in and I told him. After the test he said I have "POTS" his words! He wants me to try midodrine though, and Im afraid to. Hopefully when your doc looks at your results, he can make a decision. My blood pressure got low and pulse wasn't as high as it is usually in the am but I am going to ask for a printout next week, I can't remember. They let me lay there for a while and gave me food too! I think I would feel more comfortable trying the beta blockers, they are good for anxiety too. Good luck and sorry it wasn't a better testing situation.

Here we go again.... New Doc tomorow. Will she take me as a patient? Will she manage my illness?

I really hate having to prove myself... geesh.

Peace

Janine

I can relate, I just went through the same thing, luckily I found a doctor that actually sat down and talked to me and I was very sympomatic that day too. Don't ever give up trying. It took me 10 years! I will say a prayer for you.

Here we go again.... New Doc tomorow. Will she take me as a patient? Will she manage my illness?

I really hate having to prove myself... geesh.

Peace

Janine

I can relate, I just went through the same thing, luckily I found a doctor that actually sat down and talked to me and I was very sympomatic that day too. Don't ever give up trying. It took me 10 years! I will say a prayer for you.

I just got DX today with tilt table, and got Midodrine. How much do you take? ok sorry everyone my posts are coming out all crazy. Sorry!

Thank you for your input. As I am sensative to meds as well. I'm feeling quesy about trying the midodrine at all! Maybe I will take (1) 5 mg pill on Wednesday when hubs is here and I don't have to be doing something like driving. I have heard more bad than good about it. And I have been checkiing my pulse, blood pressure today it seems normal/ high. My worst symtoms are in the morning. Thanks for the tips on the computer, Rdslots, and Amby, I tried to reply to your welcome post and my computer wouldn't let me type anything. It going crazy, like me! I will check with wonderful new Doc.