Ling

Jessica, I agree with you 100 %. The only exception is I don’t have good weeks. Only bad and very bad days. But they are considerably worst that week of the month. I have to mention that birth controls are great if you can take them. But don’t do it with our a gyny appointment. My birth control pill suppressed my endometriosis. If you have a problem you would want to know first and then make a decision. As for the birth control pills. My body does not want to be on a pill any more. At the moment I am so aggressive from the latest one. I really believe you could kill someone on this pill. Point being we enjoy all the side effect. Me personally I get the ones not even listed on the pamphlets. See a gyny and see what works for you.

I agree with all of you and know exactly what you talking about. I however have found help for this problem. I saw an urologist about 3 years ago. I was having bladder and kidney infects at least 2 a year my whole life. I was constantly in the bathroom and towards the end I was battling to sleep due to my bathroom needs. What we found out is that my bladder does not empty and certain muscles are not working normally. He refused to give me medication and taught me to live with the problem. He stretched my bladder pipe in theatre and WHAT A DIFFERENCE. I have not had an infection since. I go to the bathroom less and can hold it longer. But when I got to go I HAVE GOT TO GO. The pinching has worn off a bit. But it is worth it. It was very painful but worth it. When my problem returns to that extent I will go for it again. My urologist said I have to go to the bathroom every hour. Maximum holding period is 2 hours. The only exception would be sleeping. Like we can sleep normally any way. I never sleep through; my body always gives me a reason to get up. Bladder, heart, water.... what ever it up to lately.

Jessica I am so proud and excited for you. What an inspiration you are to all of us. If you are thinking about it you are half way there. Just go for it with all you have. Everyday will teach you what you can and what you cannot do. I work full time, study, socialize and run a home at nighttime. Plus my two black spaniels... real babies. You are the only one that will know when you can do what and when you cant. I hide allot from my work. Days when I am bad I sit and work behind the computer. On good days I try to do physical things. But I must be honest I sometimes over do it and then I have to remember that I am sick and recuperate for a few days. Basically go for it and give it all. I don’t try and explain anything to colleges as they just don’t get it. When you do get sick and they notice just explain simply and hope they get something. David should keep an eye on you. Mario often has to remind me that I can’t take on the world and that I am sick. Get a dishwasher! If you start working it is a must.

I was told recently that my heart medication causes swelling. I swell up allot some days for no reason at all. My hands and feet are the worst. I drink allot of water and nothing helps. I also swelled up allot on Florinef and nearly a year later I am still loosing the weight slowly. Have lost 4 out 12 kg gained from 3 months of Florinef. No answer sorry, just one of our problems I guess.

Good luck and we will be thinking of you. Don’t give up. We can all write books on doctors and their opinions. I tell you some of them don't deserve to be doctors.

Great to know I don’t have bad mornings on my own. I refer to my mornings as hang overs . I feel like death warmed up everyday of my life. The beta- blocker has helped a bit but some mornings I hold on to the wall until I can walk probably. Just to be honest I HATE MORNINGS. Thank goodness for Jasmine, she gets me out of that bed and started with my day. Jasmine is my beautiful black spaniel. I have mentioned that she is the best medication ever. As with regards to what I do about all of this. I accept it. You can do nothing about it. My doctor has told me that there is no cure. I have tried so many different types of medication. Nothing works, I believe the best thing I have is my attitude. I get sad every now and again. Even scared when my heart brings me to my knees. I have allot of pain at the moment. But I am grateful for the things I can do and that the symptoms do change. I am so grateful I don’t have all my symptoms at once. They take turns to appear in my life and that is great on its own if you think about it. Good luck and remember you not alone!

Had the problem for about a year. Getting worst. Have not had the test you mentioned. Will talk to my Cardio about your advice. Thank you!

Thanks Gena, My doctors say it’s the Fibrom.. But I am seeing my Cardiologist in a few weeks time. I will discus the problem with him and see what he says. Ill be honest I have so many diseases already, I don’t want to know about any more. It’s getting a bit ridiculous.. My gyny also said he wonders if I dont have something else as well. My legs were dead for 1 1/2 weeks after my latest op. Endometriosis burnt off.

My hands and feet are driving me crazy. They are either dead or pins and needles or blood red and burning. I wake up with dead parts of my body. Today I have so much pain I don’t want to walk on my feet and my right leg is painful all the way to the waist. What can I do? If anything. I know I am building up for injections in my back again. All you Fibrom... patients know what those injections are like. Works great but hurts like ****. Plus I am useless for a few hours after the injections. What can I do, I just feel like crying. Enough already.

Thank you Jessica, What would I do without you? Lots of Love and look after yourself.

Spelling might be wrong Inderal 160 mg Effortil twice a day Tripaleen in the evenings. Pregnancy tablets,Folic acid,Calcium and a multi vitamin Atarax when I have an attack Brufen when the pain gets to much Melodeen ? To stop me menstruating until I am ready to start my family. I think that is all. Hardly anything anymore. I use to take nearly 30 tablets a day. They did not work so we stop them. I can only take my vitamins and folic acid. The rest I have to stop????? I have an appointment with a new Cardio in 8 weeks. He says he has worked with Pots before. So lets see.....

I have to leave all medication. Even my pain tablets. I wont even be aloud to go for my injections when the pain gets to bad to handle. I wont be able to take medication when I start shaking like crazy. Life is just so hard as it is I can’t imagine life with out my medication. I think I need to find a new Cardiologist. Mine is going on pension at the end of the year. Thank you all so much for the advice. You are all just amazing.

This all sounds terribly. Sorry to hear you are battling so much. Have you had a Glucose intolerance test? I use to get constant migraines or 3-4 a week. This all changed when I left sugar and started eating 6 small meals a day. It is the cheapest test I have ever had but it works if you have a sugar problem. Sugar is in everything and you will have to learn to read labels and cut out allot of foods. It is worth it I promise. Have it checked out. You will just lead a healthier life without migraines. I have had excellent dieticians who have helped me during the years. Try it you have nothing to loose.

Dear All moms I read your posts the other day about your pregnancies and I got petrified. I have mentioned that I have to leave all medication before I can start my family. I feel like death warmed up lately and cannot imagine my life with out medication. I sometimes wonder if I am lacking maturity about this topic. But I am scared, very scared. Imagine life being very difficult and hard and then taking your medication away. What lies ahead for me? Can’t I leave my medication once I fall pregnant? How many of you stayed on your medication? Is there anything wrong with your babies? What can I expect during my 9 months? I don’t want to be a burden on my husband due to a bad decision made in life. The way I am feeling lately I don’t have the guts to leave my medication. My clock is ticking and what to do, what to do? Easy for a doctor to say leave, come live in my body for a week and we will talk again.

My pain that I experience is apparently due to the Fibrom... I have. Some days I wish I could stand on my head my feet and hands irritate me so much. I would like to mention something to you. My dad has had two heart bypasses (early 30’s) and his complaint at the doctor was "I have a sharp pain under my chin." Just have it checked out and don’t worry. I am having a very hard time at the moment but what can you do but accept and go on. I have been underweight my whole life. I am now at a normal weight but only got there thanks to the Florinef I use to take. I think my body must do what it wants I cant do anything about it. I don’t have much advice, we can actually do nothing about it. But don’t give up and I recon you halfway there. Thinking of you!

You are in my prays, please let us know the results as soon as you do.

My last surgery a few weeks ago was horrible. My first problem was dying of thirst for days afterwards. I could just not get enough water in. The pain I experienced was worse than under "normal" patients. My bladder didn't work for a day after the operation and my legs were dead for a week and a half. I had so much pain that I was drunk from it. Not going to hospital in a hurry again. What I was grateful for was that my Gp was in theatre with my gyny and she is just fantastic. If she is in a room I know I am in good hands. They monitored my heart closely and blood pressure. Without her I would have been petrified. She truly goes out her way to understand, study and advice me as best as possible. Her hands are tied if you think about it. But she is just FANTASTIC.

I am experiencing the numbness more and more lately. I recently went for an operation to burn my Endometriosis. My legs died all the way up to my waist. It was very scary and took a week and a half to get "better". My hands and feet dye allot and I often have horrible pins and needles. I sometimes cannot walk on my feet it is to painful and sometimes it burns and goes blood red. I am seeing my Cardiologist at the end of the month. I will talk to him and inform you if I learn anything new. My gp says it is my Fibro... that causes it and I take tripileen(spelling) that has decreased the amount of pain I am having.

I have had allot of problems with the pill basically since I started about 9 years ago. My body first started with bleeding, headaches, nausea and the worst was the hot flushes. I have taken about 5 pills in about the last year. The last one is making me very aggressive. Which is terrible because I am very soft natured. My body does not want to be on the pill anymore and as soon as I am finished with my family, I will be going over to the latest loop. The pill will let you know when your body is not happy anymore. If you are lucky you can use it for as long as possible. But I need to mention one very important thing. The pills that I was taken suppressed my Endometriosis. I have been told I will battle to have children and it is only by leaving the pill that I found out that I have so much damage. Something to think about.

I would never take Florinef in my life again. I landed up in bed for a month because of that tablet. I gained 12 kg and lost a month of my life. I could not remember things, was petrified, tired and pretty much useless to the world around me. I had daily "shakes" and very bad ones to. My poor husband had to rush me to my gp alot during that time. I even got funny marks on my skin. To try and describe what I went through is basically just ****. It took me about 6 weeks to wean myself off and I had problems for months afterward. I am still 10 kg heaver than before the Florinef. If it can help you I will be very happy. But as for me, NEVER EVER AGAIN!

Have the test again. I passed with flying colours. I started off with about 4.2 and after 5 hours my sugar levels were still falling. We eventually stopped the tests because my sugar was going to 2.2 and I need food badly. You need to learn how to read labels. I don’t buy anything with sugar in to eat. My fat contents are also very low. My gp has advised nothing more than 3g/100g fat. Maximum 10 g pushing it. There is allot on the market in South Africa, look in the Diabetic section. Be careful of the diet products. They say diet and are full of sugar and sometimes height fat as well. All your symptoms sound like mine. Be careful Reactive hypo... becomes Diabetic if you don’t look after yourself. This is due to the body having exhausted the pancreas.

You are in allot of pain at the moment and my heart breaks for you. Please feel free to let us all know how you feel. It is very important to express you feelings. Your focus needs to be on yourself at the moment. I feel that you are broken inside and need healing with in desperately. Find someone you can go and talk to regularly .... a priest from you church. When you are home spend time and talk to God. He is doing something special in your life at the moment. And at these times we truly need to get closer to him. I am reading a book called Purpose driving life by Bruce Wilkonson. Sometimes I just want to cry and cry when reading this book. I believe it could possibly be just what you need, its not an expensive book at all. Your strength comes from God and all your answers are with him. Just talk to him and spend time with the word. It is all going to be Okay! It sounds to me like you are depressed and this is not wrong at all. Even if you need to take medication for a while don't not consider this. It helped me in a time of my life when everything was just plain ****. You are in my prays be strong and thinking of you

You sound as if you have Reactive Hypoglycaemia. I have had it for years, your descriptions are the same as mine. It is very important to try and keep your sugar levels constant. I eat 6 small meals a day and cut out sugar from my diet. I am very sensitive to sugar. You need to find a good dietician who can set up a healthy balanced diet for you. Don't just go cutting things out of your diet. I was to strict on my diet once and got very sick from it. How I did not end up in a coma is a miracle. You can also have a glucose intolerance test done. Disgusting and not fun, but at least you will be diagnosed correctly. This diet will help with the huger and cravings for sugar. Believe it or not you will eventually not even like sugar. This is coming from a Choc-o-holic

I would not do it at all. It would be dangerous. I am so sensitve and would hate to be in the hands of an unknow doctor. Trust me 99 % of them dont know anything about P.O.T.S. Not to even mention others. Even when they say they know they normal dont. I wish I could share my doctor with you she is fantastic. South Africa.

Go and see your gyny does not sound good. Edometriosis causes alot of damage and can cause you to battel or not have children. Go as soon as possible. You dont deserve to be in pain!