Ling

Purpose Driven Life by Rick Warren

Hi Paige I am angry that you were treat so badly. I am sorry to hear you are going through so much at the moment. All the physical things aside one thing bothers me terrible about your statement. Death should not be feared. Your birthday was chosen even before your parents thought of you. Your death date as well. Death is the begging of life and not the end. My brother died a few months ago. He has no more pain, emotional hurt and he left his wheelchair behind. My point to all of this is that I want you to have inner peace about this topic in your life. It is not in our hands and the more we worry about it the less we can do. Please do yourself a favour and read "Purpose driven Life" Our bodies are so different, I personally cant keep up with what it is doing. Problems are coming and going all the time. Its crazy. The best decision I made in my life is to accept it all. Sunday I could not walk on my right leg. But today I can ... goodness knows what tomorrow brings. But that it tomorrows problems. I so hope you find inner peace through everything you are going through. Good luck with finding a doctor. I wish I could share mine with you. I had problems with my legs for about 1 1/2 weeks they were dead. My doctor said it was the Fibrom..... My "shaking" last very long but I have not had one yet passed out. I did have one coming out of an operation. Half awake? I put my head on a block my shaking has to do with my heart. See maybe you can make a similar connection. Thinking of you Paige.

So sorry things are not going any better for you Jess. The prune story works great. I have wonders just drink 100 % fruit juice. Especially orange but be careful it effects my sugar levels. As for the Magnesium you know I am on "preg" vitamins already. My doctor once commented on taking Magnesium while pregnant. I know she said you would have to be careful which one you take as it can effect the baby. Even my calcium tablet I take. I take the one that only has calcium and nothing added. Talk to your doctor before you add any tablets. I hope you feel better soon.

Thank you all for the advice. I am waiting for my doctor to get back to me. It is allot better today. I could walk normally this morning but I still cant press hard on my leg. Going to buy some bananas. Thank you!

Please can you try and explain what’s happening to me. On Saturday morning I woke up to my right legs calf pulling tight. It was like this for a few seconds and hurt like ****. I rubbed and rubbed and prayed for it to stop. The rest of the day it was painful and felt funny. Sunday morning I could not even stand on my leg. My husband told me to walk and in pain I walked and walked and it got better. This morning the same thing. So what’s happening. Am I shorting salt or is this something new happening to me? Salt cramps don’t last so long do they? I can’t even rub my calf it hurts so badly? Help! Last week I had wrist pains the whole week. I cant think of anything that I have done wrong. But everything I did hurt like ****. Like we all could do with a new problem or two!!!!!!!!

My doctor has been trying since July to stop my periods. I bleed for 27 days recently and had 5 days break. Sunday the bleeding started again. This morning I woke up to the joy of menstruating AGAIN. I would lie if I told you how many tablets I have been on. Since July it has been 3. The first one made me exceptionally aggressive and the next two cannot stop the bleeding. My gyny had me on "tablet?" to stop the bleeding but it only worked for 5 days. The reason we are trying to stop my bleeding is due to my Endometosis. I had an operation and they discovered Endometriosis and badly damaged F. Tubes. I am so sick of all this rubbish to be honest. Why can’t we at least have some part that is normal in our lives? I have allot of pain when I menstruate. Like a knife between your legs on both sides. My point to all of this is I am suppose to bleed 3 times a year on this system.The pill. The reason for them stopping the bleeding is that every menstruation cycle worsens my Endometriosis. The changes of me falling pregnant don’t look good at all. So they are trying to pause the damage as it is and hope that I can fall pregnant. I must mention you feel the addition of the pill immediately on your health. But you get use to it. We are all use to being sick everyday and you will just build up a new level of feeling sick. I hope your daughter does not react like me. But this is what I am going through at the moment. My gyny wold like to put me on the loop as soon as I have children. Apparently it will help me even more. The skipping of the red pills is just to stop me menstrating. One day I guess it will start working!!!!

I am swelling like a pregnant women again. I could not wear my wedding ring for 3 days again. Had it made bigger 2 sizes already. I see it most in my hands but I know it is my whole body swelling. What can I do and why is this happening? I am not on Cortizone and have not been on it for nearly a year now. I have heard heart medication causes swelling?

I saw my Cardiologist recently and he explained all of this to me as being the joy of having P.O.T.S. It has to do with our veins not working normally and the two nervous systems that are desperately trying to get the body working normally. This is all happening at the same time, which result in a war inside our bodies. I feel like I have my own heater on inside me and I am only 26. He even commented on the cold feet. I have allot of problems with my hands and feet and I am glad to see I am not alone. All I do is dress wisely and have lots to drink with air conditioners and fans nearby at all times. I love Winter! S.A does not have cold winters like the rest of you do.

I get this and describe it like electricity running through your body. When it happens you shake and pull your body like crazy. I take Aterax or go for Aterax injections when it gets bad. I personally have connected it to my heart. When I skip a heart tablet or before I increased my dosage I use to get allot of attacks. When I was on Flurinef I had a few attacks a day. Now it is "undercontrol". I understand the feeling and know when to stop and rest or take medication. I personally accept it as part of my P.O.T.S life.

Nina you put it so well. We all need to remember that! It takes strength to live with these problems. Very blue have you tried praying for strength. I have gone through things in my life that I did not know how I was going to make it. But I promise you this. The more you pray the more strength God gives you. I often just pray myself to work or that God will just help me to make it through the day. Every time I make it to work and through the day. Gods grace is sufficient! One of the best Qualities my G.P has is that she is strict and straightforward. I love her for that she keeps me on my toes and keeps me going on with life.

I have not gone into hospital for IV Fluids. But I can mention that I had to go 12 hours with out water for a recent operation. I DO NOT RECOMEND THIS AT ALL! After the operation I was like a fish out of water I just drank and drank and drank. It took four days to get my "water level" back to normal again. We seem to dehydrate very quickly. I know I drink water like crazy as it is. My cardiologist recently told me it would even help with my heart. Just drink lots of water and remember this if you ever have to go into hospital again.

I saw my cardiologist last week. I explained all my problems including the one you are mentioning. My hands and feet die, or pins and needles but the worst it the red burning sensation. It is very painful and irritating when all these things happen. My doctor says it is due to my veins not working normally. It is getting worst and I find I can’t sit in certain possessions anymore. I don’t have any tips on what works but I normally kick off my shoes when my feet get bad. The cold sensation of the floor is wonderful. I exercise my fingers when they start playing up. Do you every wake up with parts of your body dead? I often wake up and a certain part is dead. It takes a while for it to come back to normal. I had an operation recently and it took my legs 1 1/2 weeks to get back to normal. They were dead the whole time. Good luck, this is just one of our many problems.

I have pain every day of my life. I take Tripaleen in the evening and 3 Panado's a day. This treatment has help alot for my pain. When it becomes unbearable I go for local anaesthetic injections. Works instantly and I only do the really bad areas. The injections are worth it but very painful. I accept that pain is part of my daily life. Accepting gets you half way through all of these problems.

I have got to tell you all about my new Cardiologist. He is brilliant to say the least. He listed to all my problems. Asked a hundred questions about them. He wanted to know when, how, what and how long. I have never met a Cardiologist that listens so well. When I was done with my hundred problems he explained to me why my body was doing all these things. He spoke about recent research being done on P.O.T.S patients,recent treatments available. The time, caring and dedication was amazing. I did the usual heart tests and then he gave his advice. There is a treatment been done in Brazil that works great for P.O.T.S patients. Some patients even go off all medication and have great life improvement. Their is a machine like this in Pretoria but it is 3 hours away from me. He is willing to specially build the equipment for me and let me use it in the attempt to improve my health. It is scary when you have to explain to a stranger what your daily life is like. **** I was scared after I heard myself. What he will do is a tilt table test twice a day for 2 months. If I understand it correctly it will force my body to start functioning like a normal person. It is dangerous if not controlled by someone knowledgeable. I truly have nothing to loose and you all know how badly I want to have a baby. Life without heart medication is not a option for me. He is going to phone around and try and have this machine built for me. I will let you all know where this is all leading. I would love it if he can help me then you all can come to South Africa for treatment to get well. Lets wait and see what happens. Have any of you on this forum gone for this treatment? He says he has seen a few patients in Pretoria improve considerably on this treatment.

I battle with Dizziness every day of my life. What works for me is I take Blood pressure tablets (Efortil) twice a day to help and eat 6 small meals a day. Have you had your sugar levels tested? If I eat sugar my body goes nuts and I feel like you are describing. Sugar is in everything and food is very important to me feeling normal. Have a Glucose intolerance test done, if you have not had one as yet. With our bodies you never know what new disease is hiding or starting up. Remember our nervous systems don’t work and this controls everything. I have a fantastic GP. She is not a cardiologist or anything. But she is amazing. She listens, cares, advices and helps were she can. If she does not understand something she researches or phones specialist. She has never promise to cure anything or pretends to know everything. Why don’t you just find a good GP.. or what every type of doctor. Recently I could not take living in my body. I went for my monthly check up and got my pain injections. But the best part of my visit was spending time with Her. She helps lift my spirits when they down and gives me the strength to continue living in a body that makes life ****. Don’t spend one cent on a doctor that does not deserve it! After 10 years I refuse to spend anymore-unnecessary money.

I want to give some advice that helps me that no one has mentioned. 1. Magnesium tablets helps fantastic for heart cramps and with sleeping with me. 2. I increased my heart medication recently to Inderal 180 mg. My heart cramps have improved amazingly. 3. I take Tripaleen at night for pain Fibro.. and three Panado's a day. My Fibro.. is better and the Tripaleen helps me to sleep. But remember I still wake up 2 to 3 times a night. I have never slept through. My medication just helps me through the day, does not make it any easier than what it is to live with P.O.T.S. But I am grateful for the areas that have improvements. Thinking of you during the painful time of your lives. Be brave you doing the right thing with your Brother. I wish more people in this world could be like you!!!!!!! When it all started you also went through a ruff patch with your health. Stress hits my body hard especially my heart.

I hate summer. By August this year I was wearing open shoes and short tops. I love winter but I don’t have your winters. I can’t handle very cold weather but South Africa's winters don’t get that bad. Especially in Nelspruit. But the summers are ****. I am petrified that December is coming closer and closer. I truly wanted to move to the North Pole. But by the sounds of it you who know what winters are suffer just as much. I will remember this when I get so frustrated. You all have 2 sessions to hate. I only hate summer. Now that you all talk about winter I just always thought I was a baby. At social gatherings I sit under piles of blankets when everyone else is fine in cooler weather. The one thing I must mention, I get sicker in summer than in winter?

I also get the numbness, pain, weakness and pins and needles effect. I would say my arms are weaker than my legs. Some days I cant hold Jasmine in my arms. I read some interesting information on chronic fatigue syndrome. Personally my doctor believes allot of it is the Fibrom... I know when my sugar is playing up then I get to weak to even stand on my own legs and my arms weight a ton. So which one gives me what when I don’t think I could honest tell you 100 %. I still believe the best help I have is the facts of all the diseases. Knowledge is power. After my last operation I battled with dead legs for a week and a half. My doctor blames the fibromy.... I don’t know how many disease you have yet? But read up about the common one amongst us. These symptoms can get very irritating. I hate it when my feet and hands go blood red and then burn like crazy. They must all be connected some how. With regards to what work, I don’t know? Just know you are not alone.

I got the flu injection this year. The injection was painful and my arm was sore for a few days. I was in bed for a whole day but the worst was my heart. It affects my heart almost immediately. I was actually in bed because of the way my heart felt and made me feel. I am seeing my new Cardio in 2 weeks time I will ask him why this happened. Remembering that I don’t think I will be going again. It might be because I have Barlow’s Syndrome and Pots that it affected me more. Heaven knows why. My doctor has me on Panado's for pain lately.... Fibro..... (Still trying to get the body ready for a baby) I was taking 6 a day and could not stay awake. Doziness is not even noted on the side effects list. You will all know about the joys of side effects. I personally like to collect the one's that are really rare. Got to laugh at some of this sometimes. I have reduced the dosage to 3 a day and now I can stay awake. On a positive note I did not get the flu but the heart cramps were scary .

Hi Jess I am glad to hear it all went well. He sounds great and exactly what you need in your life. Look after yourself. Hi might mouse So what’s up with the geek story? My husband calls me a nerd because I love reading and if not then I am study. I am also a nerd because I do things the right way in life. I have noticed by your replies that you are very well educated. Knowledge is power and geeks are cool in my opinion. I hope you laugh at this and don’t let it get you down in any way. Sometimes the most emotional damage is done by one's self. eg "I am fat" I won the Lotto. My Gp is simply amazing, I wish I could share her with all of you.

I want to comment about the suppressing of periods. I have been taking the pill again since July due to the diagnosis of Endometriosis. My gyny does not want me to menstruate anymore due to the damage I have. Firstly my body hates the pill and I feel the difference immediately. I have skipped about 3 periods and now my body has decided to makes its own cycle and I am menstruating again. The side effects from the pill are horrible. I could really kill someone on the pill and my breast hurt. Plus I bleed when my body wants to and for as long as it wants to. Points being if you can suppress your periods with out all my problems go for it. The doctors explain to me that it has no long-term side effects. In my case it could be the only way to ensure I might have a family one-day. Seing Cardio in 20 days. Will find out about my "baby" plans soon. I was discussing this with my husband last night. Why do we think this part of our life should be any easier when the rest is so difficult? Personally my body parts don’t work normally so I don’t know why I expect my lady parts to be normal. Part of the package?

Thank you. So great to know I am not alone

I had very bad tremors on Florinef. I still have them but just much less. I found leaving Florinef and increasing my beta blocker decreased my tremors. For me it has something to do with the heart. If I skip a b/b I get an attack. I have not had a attack in a few weeks. You need to go for injections when you have bad attacks. I carry tablets of my constantly to stop the tremors when I get them. Bad one's I go to the doctor. Try not to stress too much. If I get very upset my heart is affected and I have an attack. Good luck. The injections are fantastic and the tablets work well. But you can’t work for the rest of the day after one of them. Aterax 25 mg Take a half a tablet as needed Urbanol 10 mg Take 1/4 a tablet as needed I am very sensitive to medication. If I had to take whole tablets it would be lights out for me in 30 minutes.

Jess, I am so proud of you. I bet Ethan is as happy as can be. Independence is the best thing we can teach our children. Good luck with the silence around the house. Enjoy your new found freedom, you deserve it. The time you now spend together will be quality time with Ethan. I bet you two will even appreciate each other more now. Good luck with all the emotions I am sure you will be feeling. Remember we are all but a keyboard apart. Hope you feel a little better. Love to you.

Can anyone possible say they have lost allot of hair. For the last year or so my hair has been getting thinner and thinner. I have health thick brown long hair (Normally) I made a pony the other day and nearly died. I have literally lost half of my hair, maybe more. My hairdresser commented a few months ago. I have not seen her in a few weeks; I want to ask her opinion now. What is going on? Why am I loosing my hair? I can’t say I am taking more hair out daily from my hairbrush than before. But thinner it definitely is? Help!