blackwolf

I did PT for about 6 months then went on my own. I would reconmend, if possible you try swimming. I went to a place that had 2 indoor pools, one heated to 78 degrees and one about 85 degrees. It was nice to switch from one to another. I hope you have good luck as I did. Blackwolf

Hang in there Sue. All my prayers. Blackwolf

I have swollen glands in my neck, under arms and groin. I even had my tonsils out in order to help me eat better, I couldn't swollow anything but liquids for about 3 weeks. I also have Fibro/CFS. Blackwolf

This one must have slipped by me. I would love to help out too. I did write to my local news stations about chronic illness week but didn't have a lot to send them. I have also thought about writing to Sharon Osbourne (I really like her attitude about getting the word out about different group sdoing stuff for awareness). Personally, Oprah is way down on my list of people to contact, but whatever, I'll do my best to help. Let me know. My info is in here somewhere. Blackwolf

I have to agree with alot of the others, the irregular hb is one of the most uncomfortable things I've had to deal with in all of this. Next to the near fainting/fainting that is. Like one of my friends with MS says, "it's not the fall, it's the stop at the end that gets you." I can say, however, that mine last from anywhere from 15 secs to 5 minutes(down right sickening). And, sorry Katherine, for me they didn't end with menopause, but they have gotten to be not as often thou still lasting when they do hit. I hope you can learn to handle them with or without meds and that you get over them. They still scare the *!*!*! out of me. Blackwolf

Dear Gena, This is an everynite thing that I have grown used to. I continue to drink as much as I can as often as I can to help reduce the symptoms. I would suggest getting up and moving very slowly. Begin by just sitting up, wait a few minutes, lower your feet over the side of the bed, wait a few minutes, etc,etc. I know it takes for ever and ever move you make, you need to "go" more. However, try to remember that, even though you feel like it, you are not going to die from what is going on(ie. the tachy, dizziness and chest pain). On more than one occasion I did end up in the hospital with these symptoms only to be told to go home and rest, drink plenty of fluids and learn to live with it. Have you tried any beta-blockers? Low doses can healp some people, if you can take them. Also, if you are using a wheelchair and would like to give you hubby a break, try checking with your local hospital or a PT(physical therapy) group on teaching you how to move even though you are dizzy and etc. I have been in your currenet position on several occasions and hope you get out of it soon. Good luck and my prayers, Blackwolf

I was there ( Rochester,MN) for 11 days. 3 extra due to have heart rhythem trouble after one of the tests. I would give you one piece of advise, be ready to go-go-go. I used a wheel chair for most of my appointments as it gets very tiring going from one place to another. They, wheelchairs and appointments, are all over the place. There are also benchs and seatting all over the place. If you can, request maps of the complete complex. Good luck, Blackwolf

Personally, caffeine is the worst thing in the world. I hate the "high" of it and my heart races away(140) even on a very small amount. I even have trouble with chocolate, especially syrups. I currently am useing theophylline, an asmtha drug to help control my tachy, chest pain and shortness of breath. The change has been remarkable. I have more stamina and feel much more awake then before. I still have trouble but not like before. With this med you cannot have caffeine anyway so I just don't worry about it. Everyone is different, I hope you find what works for you. Blackwolf

I would suggest those "golden eyes", the yellow, or in my case, light green shades. They get rid of most of the glare and I even get my glasses tinted a light rose/gray color. I notice that most florescent lights are terrible on my eyes, I have even gotten sick to my stomach from the flictering of those bulbs that are about ot go out or have bad regulators. I hope you find what helps. NEVER feel embarressed by useing sunglasses in classrooms, I had a note from my Doc when I needed them for my typing classes. Blackwolf

I've had the full body muscle spasms/jerking, but I do wake up with them about half the time they happen. My hubby says it happens about 10 times a nite. I was never bugged by it to much to pay attention, it doesn't hurt like some of my twitching/muscle spasms. PS I tryed quinine once, and only once. The reaction was to horrible to relate.Let's just say 4 days in the hospital.

Welcome Patricia I've also seen Dr Low, he was a great help to me. He really made a difference in my treatment, just changed one med and wow, I was really good for about 18 months, now I'm having trouble again. Mostly my own fault, not resting like I should. I'm starting a new drug and having alot of good luck, hopefully you will also get the help you need. Blackwolf

Hi Glimmer, Welcome to the site. I know it is tough to try but even moving around in bed can really help. I haven't been stuck in bed for about 6 months now, but I never have enough ohmpf to get much done. I spend most of my time playing with my kids(son Andrew, 10+, Daughter 7, Lorrie). My husband is my caretaker and also suffers from major depression and post tramatic stress from a terrible childhood. He does most of the house work and helps me when needed. I find that the symptoms I suffer from are "cyclick" and boy the "down tie" is rally tough. I hope that you can find some help. I'll pray for you. Blackwolf-32 yrs old POTS/OH(orthostatic hypotension) 4 yrs, Fibromyalgia/chronic fatigue syndrome 10+yrs

Dear Brwneyedchica, I agree with the others. DO NOT GIVE UP! I can not only sympathise but empathise. I to was well into my nurses taining when I got sick. In fact, I had talked the nursing home where I worked (CNA/Med Aid) into helping to pay for classes on agreement to work for 5 years for them. I was flying high then BOOM. Have you considered a position as a Med Aid/Tech. I don't know where you live, but many states have these positions. Some even except those as clinical experecne(like me in South Dakota). Many doctors offices are also excepting them to help in the office instead of paying the RN/LPN. I myself am considering becoming a councelor for people with chronic illnesses. Jsust a few ideas. Please don't give up! Blackwolf

I was Dx'd with Fibromyalgia/chronic fatigue syndorm long befor the POTS. I know exactly what you are talking about. I"ve had the muscles spasm for years. If it gets really bad I take Skelaxin, a muscle relaxant. Otherwise I just ignor it. Sometimes it is very painful, my favorite thing to do is soak in the tub. It varies as to warm or cool water. If I haven't been doing mush, I take a warm(not hot) bath, if I've been really busy cool is the best for me. Good Luck and don't sweat the small stuff. Blackwolf

Veryblue, I was sick in almost the very same way, it was overnite, two anyway. I was a work(Cert nursing aid) and felt like my heart was going to pound right out of my chest. It was going to fast to count, the pulse/oxsimator said 220. I thought I was going to die. It lasted for 2 hours and I ended up in the local hospital for 3 days. It happened about 6 more times. After I went home I just felt like I had been hit by a car. A few days later, I started the fainting and racing heart rate. Opps, rambling again. Blackwolf

Dear Sue, Good luck! I hope it works out for you. Remember to take it easy, don't over do it. Blackwolf

I wouldn't be surprized by a rash like that. I've been thru two so far. 1 was a yeast infection.I soon't mean to pry, but do you have any sore red areas under your breasts or in your groin. I started with that years ago, I now regularly use Desenex powder under both breasts and in my groin area. The other was an allergic reaction to dairy products. It took about 30 minutes in a allergists office to get the answer. I would reconmend a medicated powder to help with the itching, if your sores aren't open. Good luck and I hope you get the help you need. Blackwolf

I have to side with many other, Ativan is a big no-no. My biggest trouble was getting any realy effect from it. I took huge dosees and never felt any better. I was lucky in one case, I had very little in way of side effects. Morgan, if you read this. Most states have a small group or two that help pay for trips out of state, like transportation, hotels, extra meds, etc. Our local gruops are the ELCA(Luthern Min. ***.) and SHINE. I would also suggest appling to your state Medicaid board for "special circumstances or medical needs". I was given a chance to go to Mayo(Rochester, MN) because of it. Good Luck, Blackwolf

I've been thru the process. Basicly they want you to get off SSDI, so the offer classes and other education opportunities. I took typing classes and some basic office type stuff in order to go to my local college and get training for medical office/med tech training. I only found out later that "in my own best interest, it was not a good idea for me to attend calsses as I may faint and cause harm to myself." What a joke!!! Like I have let my fear of fainting or falling down stop my on doing all the other stuff I do now. If you feel you would get any real help from the program, give it a try. Good luck, Blackwolf

I also have trouble sleeping. I either seem to not sleep at all or sleep to much. Earlier I had left a note about starting a new med, it is theophylline. Normally used for asthma, I've had really good results. I take either 150mg or 300mg depending on what I'm doing. If I find out later in the day that I will be a little busier, I can take the other 150mg(before 4pm). I am slowly adjusting to a better sleeping pattern. I fall asleep faster and wake up better. I still get sleepy during the day, but I find that a short nap(30 minutes) is enough. I agree with some of the others, try to get moving when you feel overly tired. Mabey consider a light snack, crackers, fruit, or dry cereal. Good Luck, Blackwolf

Veryblue, you sound a lot like me, I was a work-a-holic. I had a fulltime CNA/Med-Aid position in a nursing home about 30 miles away from where we lived. I worked nites and evenings when needed, 7 to 12 hour shifts, 4 to 7 nites aweek. I also has 2 part time jobs, one cleaning a laundromat 3 times a week and the other cleaning and minor maintance for some appartments(3 buildings with 8 app. each) in the town we lived by. My husband and I also "subsistance farmed" we grew enough food for ourselves and our livestock. We had chickens, rabbits, a few milk cows(we milked by hand), and 2 mares and a stallion for breeding and riding. We had about 3+ achres in garden plots and about 2 more in hay and small grains, we did all the work with a small tiller and by hand, LOVED IT! Over the period of about 2+ months, I was barely able to make it around the house. Blackwolf P.S. I was never fast, but I got the job done in a reasonable amount of time.

Boy, I must be really lucky, we don't have those charges yet. Of course, I live in South Dakota and we always seem to be a few years behind the trends. We aren't really a "rich" state to begin with so I guess that makes a difference. I have noticed it is very hard to get a dentist that excepts medicaid around here. This article really makes since to me. Blackwolf

BOY, Do I know what you mean. Even a ride across town can make me feel sick. A ride to the in-laws is so hard(70 miles). We leave early and I just sit for a while before the rest of the family gets there. My father-in-law even has the gaul to complain about how little I do. Funny though, my sister-in-law just tells him to shut up. I love her to death and she has been the most understanding of all of the in-laws. Just remember, NO ONE knows how you feel but you, it is your decision and you are the one who has to suffer thru the event. Good Luck, Blackwolf

Welcome, Osgerbic. This site is a life line for many here. If your looking for what helps, check out our what helps link on the front page. I'm a little curious, what's your dx(diagnosis). I have POTS(postural orthosatic tachacardia syn), fiblromyalgia, and chronic fatuge syndrom. As to support stockings, I wouldn't live without them. There is a link for brightlife on the what helps page, they carry a large group of knee-high, thigh-high, ect. I don't go anywhere without mine. You might want to talk with your Doc about the amount of pressure you need for the best results. As to medication, that would be up to your Doc and you. Many of us on this site have trouble with drugs and complications. Again, welcome and good luck in getting the help you need. Blackwolf

I agree with the others. A pill caddy saves me the worry and hassel. If you really don't want to get the caddy, settle for a note pad and pencil. Keep it only with your meds and off limits to others and other uses. Blackwolf