kayjay

Without meds resting - 150's walking - 170's + With meds resting 35-75 usually about 65 walking about 115-125 on meds wearing my Heart rate monitor I have had a low of 28 and a high of 200 (not sure what I was doing may have been walking upstairs. I was told to only be concerned if my heart rate went up and stayed up (or stayed too low) I know it is going to swing too much.

Nina, Just wanted to let you know that I am thinking of you and you are not alone. A few days ago i told my father that I just wanted to stop taking all my meds. Chronic problems are exhausting. Please let me know if you ever find a cause for your right-sided flank pain. i have had this for years and no one knows why... but I could push on my right side back and make myself vomit- if i wanted too. I will be praying for your surgery. it sounds like you have great attitude about that but even minor surgery can be rough ( had a cyst removed this past spring- I was really worried). Anyway everything went well and it is so important that you get these gyn issues taken care of! If you have to have general anesthesia- ask for saline to help keep you hydrated- this helped my HR and BP. Anyway- hang in there! You can get through this rough patch!! Sending love and prayers your way- remember you are MIGHTY MOUSE not minnie mouse!- kari

I have a sprayer attached to my tub. I have not taken a shower since I last traveled somewhere. I can wash my hair with the sprayer better then sitting in the shower. this way I can get clean like a shower and have the comfort of sitting. One tip that worked for me - if you are not at home a three legged cane seat worked for me in the shower. I bought a few cheep ones off of amazon. I leave one in my car, one in my hubby's car and one in the house. ( I use it outside when he is gardening or splitting wood etc. to keep him company. I have used it in hotels and would recommend for anyone when they are not at home. Keeps you safe and

Sorry you are here but welcome! I think you will find a lot of help and support on this site. I hope you are doing better soon. There are some great people here that have been great about sharing information. I think I have learned more here then from my doctors- Kari

Stace- I was put on a birth control pill -and I am to only get my period every 3 months. I wonder if this would help you since you are worse around your period. It might help - I was told by Mayo clinic that the Pill has to be monophasic and I don't take the inactive pills for the first three months.

I also agree that the overlap between OI, CFS, FM is undeniable. Same horse- different name. Totally agree but for many of us could we add IBS or slow gut, migranes, and allergies/ drug sensitivities? So many of us seem to have these problems as well.

Stace- just wanted to check in about the drug issue. I was worried about taking Lyrica- but so far so good. I think it takes a week or two to get used to the side effects- but last night I took it- did 15 min on my exercise bike, used some hand weights and stayed up until 10 watching the world series. It also may be helping with my IBS- yesterday I did not have a problem at all (today a little). Anyway i am hopeful that it will work for me- i don't know what would be best for you. What did the doctor say? good luck kari

can you tolerate it in food.? I know Pumpkin seeds for example have a lot (we just carved our jack o lanterns). You could find out what food are high in it and try to eat them more... or are you looking for a higher dose? I am just wondering if there is something else in the suppliments that are bothering you- kari

Congats- and I won't be much help... but I did have some thoughts about the birthing center. I had problems first during pregnancy, and my daughter ended up in the NICU for almost a week- she is fine.. but you may want to thing about having your child in a yucky hospital just in case. Also I nearly died (I think) during the birth of my son as my BP just bottomed out. Just my thoughts. Birthing centers are sooo much better but you don't need to have Meds just because you are in the hospital... but I the baby needs something you might be closer to equipment and Doctors. Hope you don't mind my two cents and I really hope you are feeling better soon! When I wear rocker shoes- it helps and maybe you could try the spanks made for pregnant people. Also V8 has helepd me very much. Do you know what you are having.

Firewatcher- To confuse the issue further, I have all three (although my doc does not give CFS as a diagnosis- he views it as a symptom- I surely fit the profile )- and I believe in my case it is an auto immune problem. When I first got sick Hopkins thought that I had lupus based on my ANA. When they "spun out" the cells it was not lupus but "a very unusual speckled pattern". My dysautonomia "crept" up on me when I was pregnant. It is possible that I had a virus that I didn't know about but it would be a little strange that no one around me - esp. my husband -has ever had any of the problems I have had. Maybe a virus caused an auto-immune reaction? I have always thought that my problems started when I had a reaction to toxic black mold when I was pregnant. Allergies are an immune system problem. I wonder how many of us have allergies? Funny how it would help to have a better understanding. I was so relived to have a diagnosis- and I think we all want more answers even if we don't get better. P.S. If you sleep all the time like I do.... I would say you have both . Kari

How are things today? Update when you can. I know so many of us on the forum are thinking of you and praying for you. DON"T forget to take care of yourself so you can be strong for your family. sorry your dealing with this now!!! with love- kari

alicia- thanks for the info. If i don't do well on lyrica I am going to ask about the drug you are on. i wonder if he chose lyrica because of some of the other drugs I am on. Does neurontin help with your energy level?

Ram- can you try Klonopin? Nothing has helped me like this drug. It allowed me to sleep though the night Huge!!! I wonder if it would help you because I also used to drink beer to feel better. I don't know why alcohol helped me but if did. I don't (can't or shouldn't) drink now because of the meds I am but I am better off with the klonopin anyway. I take .5mg at bedtime. kari

How wonderful. I am so happy for you. God is good! So nice of you to share your story because many people will recover. All of us should have some hope. Best wishes for your future and the wonderful things ahead of you in life. - kari

I know exactly what you are talking about. I took my daughter to get a hair cut and couldn't figure out the tip!! I was so frustrated. The only think that helps me is sitting down... sometimes I drink a little coffee. I went from being the type of person you describe ....to an idiot. I love to read and used to think I could learn anything. Now I have trouble some days even reading these posts. My suggestion is to give yourself a break and try to not care what others think. You still are smart... your body is just not working right. The neuro at Mayo in Minn. told me that almost everyone he sees worries about having brain damage ...but they don't. I told my husband (who has known me since high-school when one of my nick-names was webster b/c of my vocab. which I used to try to "dumb down) that I think my long term memory is OK. I know it is hard to not care what others think but I am really trying to grow in that direction. I think a lot of people may think I am stupid or a drunk. Last year at my son's parent teacher conference ( before I was diagnosed) I was totally out of it. I couldn't understand what the teacher was saying and I have an M.Ed.!!! I am sorry that you are dealing with this... my only suggestions are try to sit if you need to think.. wear compression... I wear MBTs they are rocker bottom shoes.. also V8 helps me a lot. I think the brain games are a great idea and fun but if you are foggy don't get frustrated... just play later. i think we all have our mental ups and downs. I hope it helps in some small way to know that you are not alone in dealing with this issue. Also maybe you could keep a journal or do some writing. It can be fun and no one else has to see it! kari

Firewatcher, My dr. does not believe that CFS exists. He believes that CFS sufferers have a reason for the CF and won't give it as a diagnosis because there is a cause for the CF. I don't know if I expained that well. He thinks science just hasn't caught up and labeling someone with CFS is almost a "cop out"- he keeps looking for the underlying cause of my CF and trying to treat it. DOes this make sense? I know I have POTS, I have what he calls "text-book Fibromyalgia". But he won't give me a CFS diagnosis although he is looking for and trying to treat my horrific fatigue. In my case my mom reminded me that when your body is under stress- you need sleep. Also when you are trying to heal you need sleep. I have to nap at least 2 times a day and I sleep about 12 hrs a night. Anyway I know his point of view may be offensive but I like that he is looking for solutions for me- In my case the other 2 problems can cause fatigue.

Not sure about this but I think Neurontin may raise you blood pressure. My bp swings and goes high sometimes so I think that might be why my dr. put me on Lyrica. Let me know how you make out. I just started the lyrica yesterday- low dose 50mg 2 times a day .... and I had a pretty good day today.

Firewatcher, I think you may really be "on to something" Klonopin with beta blockers has stopped the surges for me. I have not had a huge "storm" for a few weeks now. I think I really need both drugs. I had horrible surges awake and asleep. I would have them in stores, after walking up stairs and even if I got startled. Now I almost expect them sometimes and I realize that I am ok. I think for me it took a few months for the meds to work Maybe 4 months.... but I have realized that I really am not having these horrible episodes any more. Just still have pots though!! About addiction... I was told that i would most likely have Dysautonomia for the rest of my life. I realize that I don't care if I am addicted to my medication... as long as I can always get it . haha. Also I never take more that one pill a day. If I need it before bedtime I break it in half and take the other half when I go to bed. I don't know why Dr. Grubb would not recommend a bb for us hyper folks- Mayo clinic put me on one and I was horrible on a alpha/beta combo- made me too low.

I used to have the wired but tired thing... now on meds I can nap. Today my husband was home and I have to rest before my children get home from school so I took 1/2 of a .5 Klonopin. I slept for two hours and was able to make dinner etc. On meds now I can take a nap and I think it really helps with the quality of my life.

Janey meds have really helped me. I think you need something. A beta blocker has helped me as well as klonopin at bedtime (so I am not sick at night and I can rest). I also take lexapro but my dr. now (he is a good one) doesn't want me on that drug but he doesn't want to change in now. Also yesterday I started Lyrica and now that I think of it my mom took me out to lunch and I did ok. I am not completely well on meds but I was HORRIBLE without them. There must be something to help you. The beta blocker seems to block the adreneal surges. I think it has helped with a lot of my symptoms. Hope you are doing better soon. Also I want you to know that I only get sick laying down if I roll over. kari

Thank you all I started it last night just 50mg 2 times a day. I do worry about starting new meds. One nice thing for me is that I could use a little constipation in my life. I have the opposite problem now.... I am hopeful that this drug will help.. but I am really going to watch what I eat. I do know this.... sleeping is fattening!! My hubby and parents get mad at me that I even care -- i know they are right. It would be great to be fat but healthy... fat and unhealthy is just even more unfair!! Can lyrica give you headaches?

Janey- I don't have EDS but I do suffer from the digestive problems you describe ( but not as badly). For me I think the problems have to do with movement. I know I can feel sick if I roll over in bed too quickly. Does moving more slowly help you? I do get sick if I stand too quickly. Also if I have a "surge" I am running to the bathroom. I have found that when If I take a probiotic it helps a little- not because it fixes the problem. But because when you have digestive problems a lot you system just gets out of whack. I have gone form basically having to run to the "loo" all day - To not having bad problems every day (except I am always sick when I get out of bed). I know they won't "cure" you but a probiotic can help replenish the good stuff in you digestive tract that we are always losing. Sorry I am not more help. I just know with me my digestive problems are POTS not EDS. good luck kari

Lyrica worked wonders for me. It did nothing for my pain, which turned out not to be neuropathic pain, but it really decreases my sensitivity to light and noise which is otherwise intolerable for me. Inexplicably, it also does great things for my nausea. Without it, I ended up in the hospital with uncontrollable vomiting. I didn't gain any weight on it and I didn't find it made me sleepy at all. I hesitated to respond at first though, because my reaction is so atypical. Thank you for giving me hope- do you mind telling me how much you took- what other drugs and what kind of POTS you have. I am on Klonopin, lexapro, a beta blocker and birth control pills. If lyrica works well for me I might be able to cut back on some of the other meds. THANKS SO MUCH!- karri

Green - I don't know why some of us will not be cured- My neuro at Mayo thinks I will always have pots- I've had it for 11 years now- I just want to function as well as I can- I hope you have some good days- or moments . Don't lose hope!

I am wondering if any of you have taken it with no ill effects. I don't need anymore chub- I was thin before I was on meds. Now I am "normal" chubby would make me nuts! Also the side effects say that it makes you sleepy. I want to take it to have more energy!!!! I sleep so much and really can only do one thing a day. Has this drug increased anyone's energy level? As always THANK YOU!