JaneEyre9

I take a B complex vitamin with C. I started taking it because of articles about what Ithomas said-- its ability to scavenge the free radicals that are thought to be involved in chronic fatigue syndrome, multiple chemical sensitivity, and the symptom of muscle aches. It is also supposed to help immune and nervous system function. I've noticed an improvement in my level of muscle aches since taking it regularly. My B12 levels were tested after I started taking it, and they were apparently normal. I keep taking it though because i need every help i can get.

Hey Patti-- Sorry to hear about Chrissy's nausea and cramps. I had a really terrible time with the "low dose" hormone pill when i tried it. It made me vomit over and over again along with awful nausea, dizziness, severe mood swings. Yikes! I was not a happy camper. The way i cope with my bad period cramps is a combo of two things: 1) Ascriptin (maalox coated aspirin) taken with food every 4-6 hours for the first 2 days of my period 2) ThermaCare menstrual heat wraps (I can even wear these under clothes, so they aren't visible.) Hope this helps! Kristen PS-- I also find that when i can exercise regularly during the month, that helps lessen the bleeding a bit.

I'm really glad to hear your good news, Tessa! It sounds like it worked out in the best possible way! Kristen

I agree with Rita. You can start with just some movements like leg lifts in bed. Yaz exercises are along those lines. The goal is to do the best you can with what energy and ability you have. I've always been encouraged to get *some* movement and upright posture into my routine. Obviously it does no good to run ourselves into the ground and then have a backlash of severe symtoms. Sometimes cardiac rehab programs can help you pace yourself and monitor your vitals. I found a program like that very helpful.

I've had the symptoms of CFS/ME for as long as or longer than I've had POTS symptoms, but i've never been officially diagnosed because doctors basically indicated that CFS wasn't a "real" or helpful diagnosis. I just was told i was run down and "fighting off a virus" all the time. I'm glad that this illness is getting the recognition it deserves. I hope that reliable, standardized testing for it will follow.

Hi Lauren, I read your original post and have been thinking about you since. Thanks for the update. I am glad to hear that things are "ok" for now. You must be so wrung out going through all this. ((Hugs)) Kristen

Quick update on Melissa: Tomorrow morning, she is going to be getting the NJ tube out of her nose and throat and a more permanent J (and G) tube put into her abdomen. The new tube will allow her throat to heal as she puts tiny amounts formula directly into her small intestine. The hope is that this will cause some motility in her small bowel and stop the bacteria overgrowth thought to be the root of the recurring sepsis. She will still be getting her nutrition from TPN because her digestive tract can't handle more than a trickle of feeding per hour. The procedure is going to be done at a different hospital, so she'll be transferred, have the procedure, and then be sent home . There is no way to tell if this will stop the sepsis from coming back, but it is at least something to try rather than just sending her home without anything (and off of antibiotics). That's all for now! She is still feeling really miserable, so this is the next step in the process. The hope for this procedure is just to prevent another crisis from happening, not a total cure.

I've been trying to reduce my florinef dose slowly for about the last year or so. The med gave me side effects at "normal doses" (but i've learned I usually need a very small amount of medication compared to most people since i'm so sensitive to chemicals). I took myself down slowly by cutting pills in half and then alternating days (like 1/2 one day 1/4 the next). After a month or so at a lower dosage, i would try to lower it more (like 1/4 everyday). My side effects went away, and i found a dose that made me feel good. I tried to lower it more, but after a week, i was dizzy with low BP. I tried this a couple times to make sure it wasn't a fluke, and sure enough, my symptoms would increase at the lower dose. I went back up, and for now, i've found my "perfect" dose. I just want to encourage people who want to see if they still need florinef to wean down slowly because it's more likely to prevent a major crash than just going off of it cold turkey. Anyway-- just my 2 cents. Less is more sometimes! Kristen

I saw Melissa yesterday-- her room is covered in your beautiful cards and well-wishes. Corina-- your hand-made card is exquisite! Rachel-- your fish stickers are adorable-- i recognized them from the ones on Melissa's b-day card Others-- your fish cards, thinking of you cards, fish notepaper, and colorful flowers are filling up Melissa's room with love and beauty. I wanted to make a special point to post about how caring and wonderful this forum is-- i could visibly see it, smell it, and feel it in Melissa's room yesterday. I wish i could remember all the names of people who have sent such cute gifts and cards, but i was a little POTSy yesterday from the trip. Please know that you are brightening that little room! She has a private room with windows right now, so it is a great place to display her cards. Others have covered Melissa's medical update, so i won't repeat. I'm just specifically posting to say that this is a great support network-- which is so wonderful considering we are all working with much less energy and strength than the "normal" person. Kristen

Hey all, just to add a new tid-bit to em's post... the appointment at U of Mich. has been set for thursday this week. Melissa will be transported in an ambulance with a nurse to take care of her very complicated IV's (antibiotic/antifungal/TPN). They are hoping for the "best" scenario-- that U of Mich. will keep her, but it is likely she will just get a "game plan" for testing and then sent back to toledo. So frustrating and scary , but still, the next step. Kristen

Hi Julie, I took a BB and Florinef at the beginning. I actually got worse on that combo. What eventually worked for me (along with plenty of rest, fluids, and salt) was to cut the BB out all together and reduce the florinef to take just what i needed to get by. I'm very drug sensitive, so the meds were causing major problems. I think that a BB and florinef is a common combo to do just what you said: raise blood volume and lower heart rate. Hope you find what works for you! Kristen

loved it pooh-- wish i had more time to write! wanted to say thanks for expressing how we all feel. kristen melissa, we love yoU!

cardiactec, i also feel this way...especially today, so your post really hits home. This is a hard, lonely battle sometimes, and even when we have God and the people around us who care about us, we are ultimately the ones that have to endure the pain, loss, and limitations. It can feel really isolating and discouraging. I find it comforting that others, here on the forum, share these feelings and that i'm not really "alone." There aren't any answers I can offer or quick fixes, but God is always walking beside us, especially in our darkest hours. Kristen

Quick note about Melissa's condition tonight: She said that the bacteria causing her sepsis this time is different from the previous time. She'll be having a test tomorrow to determine if there is a hidden source of infection in her body that they are missing. That's about all the info i got since she had just gone back on morphine for her excruciating headache. Melissa, I have no words to say, just hugs and prayers. Kristen

That sounds like a lot of fun! I'm an electrophysiology girl too! It's so wonderful when a POTS-friendly opportunity falls into your lap like that. Thanks for sharing the good news with us! Kristen

Good for her for fighting back! I sure hope she wins.

I have an extremely heightened reaction to stress as well. It's gotten to be a real annoyance because "little" stresses make me shake and tremble (teeth chatter, the whole nine yards). I think now that i know why it's happening (because my body is flooded with adrenaline), it helps me to cope. Before, when i didn't understand, i thought i was having panic attacks, and it just made me feel more anxious because my body was out of control. Now, I just think "here we go again!" and try to lie down, take deep breaths, drink peppermint tea to calm my gut, and wait it out. I've learned the more upset i get about my reaction, the longer it goes on, so i just try to minimize the damage! Kristen

Hi Rose, I'm so sorry to hear about how your illness ruined your wedding. It is certainly difficult to get used to these limitations. I fought hard to try to work in spite of my condition and ended up making things worse. I read something on a chronic fatigue website once that has really helped me... it said not to live outside of your "energy envelope." I took that to mean: only push yourself as far as your body allows at any given time--no farther. If you give your body the rest, proper food, liquids and respect it needs, it has the best chance of healing. Obviously experimenting with meds and other remedies is an important factor, but I found out the hard way that doing "all the right things" medically is no insurance against getting sicker. Stress is a huge factor that needs to be taken into consideration. A lot of times we may feel guilty if we don't push harder and farther, but ultimately, that can make things a whole lot worse for our health. It is also hard when people don't understand what you have. Take a look at www.dinet.org and maybe you can order some brochures that can help educate those who don't understand your illness. Glad that you found this site...this is a great place to find support! Kristen

Very glad to know you're home, Sunfish...hope you regain your strength quickly.... Kick all those chickens out of your house too ;-)

I'm happy to read your good news! Having a good doc and a good family can make a big difference during hard times. Kristen

Dear Ernie, I'm sorry to read about your anniversary day. It's so hard to have lost a 'way of living' and think back, wondering if different choices could have saved us such suffering. That is a suffering all in itself. Hugs to you from me. Kristen

This made me laugh... can you just imagine going up to someone and telling them "I have the Wiggles!" hahaha... must be the mood I'm in today, but that makes me crack up! I read in a magazine that he had "orthostatic intolerance" so i don't see the media calling it anything other than what it is. Hopefully it will stay that way!

Hey Kim, I sent you a PM about my doc and as well as one other. Hope these names help! Kristen