Suzanne

Hugs and prayers from me. We are guinea pigs and it *****! Just be kind to yourself in between trials. I have a breather so i can know what "normal" is before trying. Take care

I have had three births. With all of them I have shown very early, had all day sickness, braxton hicks from 25 weeks, engaged at 30 weeks and then finally had to be induced. All births were vaginal, only gas for pain relief. Afterwards, POTS symptoms much worse, but did not know it at the time. Went on a saline drip after births which really helped with recovery and did not get out of bed for 24 hours, no matter what the bossy nurses said to me!! I had homeopathic treatment for last baby. I had drops to take during labour and a cream to put on to reduce swelling. It made a huge difference. Much calmer, less pain and fantastic recovery due to the cream. It is such an exciting time. Go with the flow. It will all work out, but talk to your doc if concerned. Let us know how you are going. Hugs Suzanne

Thanks for all your feedback. I am going to give it a try and will discuss with my doctor when I next go. It seems everyone is different. I have to laugh about taking contraception because my husband finally had a vasectomy last year! lol

am amazed at the variation in working capacity of you all !! I work part time in a gym! I sell memberships and have to kinda pretend that I work out which I can't do anymore. I have gone from 20 hours a week to only 8 and am finding this even too much. My company is very supportive, but it is getting to the point that I am always ringing in sick and it is not fair to them. I really like my job because I get out of the house and can talk to people etc and works well with my kids. It is taxing as I have to go up and down stairs a lot and put on a happy face for sales. I am dreading giving up and am hoping to find some work to do at home on the computer. I too have always been busy, active and staying home all day lounging around sounds great when you are at work full time, but it feels very empty. I do manage to fill in the day, but it is easy to drift from one to the other. I hope you can find something. I think studying sounds like a good option. I am thinking of that, but the brain fog puts me off a little. Good luck and know that I understand how you are feeling Suzanne

Is anyone taking oral contraception to help with POTS? I have found it very beneficial, it helps with the mood swings during my cycles. I am considering taking it without a break as I am virtually non-functioning the whole time of my menstrual cycle. I am so light headed and weak that I am not able to go out and only do basics at home. I am not sure if there any problems with this, but have read somewhere that it is helpful. Would appreciate any info or feedback.

I had to be induced for all three of my deliveries. I always thought it was a low level of oxytocin, a hormone that brings on labour. The induction was through a drip and brought on labour very fast and hard. Luckily I had them all after 4 hours, but needed saline drip afterwards on the last one. It made a huge difference to my recovery. I fainted after the first and broke my nose! I was undiagnosed throughout, but can see now how the birth severely affected me and maybe was the trigger?

Hi Babs and welcome. You will find out heaps of info here and also make some new friends who understand how you are feeling! It is easy for doctors to say just manage your symptoms. I think they are lazy and unfeeling. It is too soon to take this approach. I am a big believer in homeopathic medicine, it has really helped me and my kids in the past. I have not tried any homeopathic treatments yet because I am trying all the conventional medicines first. If nothing works, and so far, nothing has, I will see a homeopath. It may take time, but finding a doctor who understands the condition and is willing to try and help you, is essential. I am still looking, but on the way have found answers to bits of the puzzle. It is not easy, but at least you are trying. I would try and find a support group for CFIDS. There is a fantastic on-line support group and course to do if you are interested, just give me an email. Hang in there, we are here for you! Suzanne

Great answers, but the one that brought a smile to my face was "fair to partly cloudy, mostly cloudy". I am going to use this one!! I generally say "Right at this minute I am .....". It's honest and accurate. My health can change rapidly, about to faint and then able to go and hang washing on the line etc. So I think all I can do is comment on how I am right now. I also agree that you give a variety of answers depending on the person asking. Sometimes it is just easier to say "fine" and at other times you need to offload on to someone. As said earlier, you don't have to reveal anything you don't want to. At the moment, I am partly cloudy and in need of a good lie down". Cheers!

All exercise seems to cause me trouble. Have tried weights, swimming, walking etc. Floor work, very mild and low reps seems about the best. I always lie down afterwards. I am desperate to find something that works. Doctors don't seem to have a clue and give me contradictory advice. I guess as usual you have to work out what is best for your body. I have always enjoyed exercise and it is extremely difficult to scale it down to a livable level, but I think it is essential. You seem to be doing quite a bit. Suggest you go back to a very basic level that doesn't cause trouble, or even less than that so you know you are really safe. Then increase very slowly and maintain that level of increase for longer than you think you need. Good luck!

I have tried Mestinon twice and have found after 3 days of headaches and nightmares, it did not help. It did give me more muscle weakness and I found I was getting too wobbly to walk very far at all, which really bugs me. I am becoming very unfit so not sure if it is totally related to Mestinon. It pushes my heartrate up, but do not get any more energy, just feel as bad, if not worse. I am on 10mg only and could only tolerate 2 doses per day. Hope it works out for you.

I have always been very fit and active and it is SO FRUSTRATING to not be able to exercise. I have really scaled everything down to bare minimum, but have not found anything works well, I always suffer for days afterwards. I have tried very mild walks for 10 minutes, very light weights workout, generally trying to lie down and do floor exercises for max 10 minutes. Have tried light boxing, skipping, swimming laps, but have been really bad afterwards. Have heard that cardiovascular exercise is not recommended. Has anyone had success with yoga or pilates. I would not last an hour class, but maybe I could try at home? I would really appreciate any feedback, as I find with this illness, there is no release. I am barely working, housework is a major problem and I find I am sitting and lying around all day with no outlet. I always used sport as a release from stress and I really enjoy activity. I will try anything!!

I am back from my trip to Perth, many thanks for all your tips. I was fine going over, but coming back, (West to East), I found difficult. I was tired before getting on flight, but once back, I was the sickest I have ever been and have been like a zombie for 3 days. Even my face was aching and I did not want to speak for long and that is amazing for me!! lol! Today I am just starting to feel human. I am surprised at just how bad I have been. I did not overtire myself on my holiday, except for the day prior to flying, so maybe this was enough plus the flight to do me in. Anyone else have similar reactions? The best part of the holiday was not thinking about my illness 24/7 and focusing on family etc. Such a relief. Now I am home again and the world is crowding back in.

Yuk, this is overload for you and I feel for you. My youngest son has had tubes in his ears and made a world of difference. I hope they can do something for you. Take it easy Suzanne

Thanks everyone for your input. I will do all of your tips. I am going to Perth (Australia) for a holiday with my family. Thought I would be much better than I am when I booked about 9 months ago. It is tempting to stay home, but my family need to get out and I am sure it will be fun once I am there. Thanks again

Hi Mary, it seems like overload for you, but I am praying for you and know that God has it all under control. Sounds like there are many reasons for it, I have also had bleeds, from an inflamed bladder they thought. Please let us know how you go. God bless.

Hi, I am taking a 5 hour plane flight tomorrow and am concerned about my BP. My symptoms have been worse lately, and I am feeling very light headed and dizzy just sitting here. Does anyone have any tips? Many thanks

I am sorry, but have no advice, only sympathy. I am blessed to live in Australia where we have a government funded medical system everyone can access. I just feel for you being in this position. We are following the American system and I am worried about it. I am praying for a solution because God has you in his sights. Hope something comes up soon. Hugs.

I am sorry to hear of your troubles. Giving up work is so hard, I am on the verge of it and wonder why I am hanging on so hard when it takes so much out of me. I hope that you can really relax and take care of yourself now and your family who sound very supportive. I am sure you will find a new interest, it is amazing what comes up when you have cleared away all the busyness with working etc. I have started doing surveys on the net which are fun and you get points to buy stuff with etc. Faith is also integral. Sending you hugs and warm smiles.

Thank you for sharing your story, this is my first post and I feel exactly the same and it is my biggest problem with POTS. I have 3 kids and have to drive them around often (I have managed to get the oldest two to catch trains and walk a lot as some days I can't cope). If I am feeling well, driving does not seem to be a problem, but if I am particularly tired, fuzzy, etc I find it so daunting and sometimes just cannot get in the car, then I stress about how I am going to get my kids there etc. My concentration is so poor that I do fear an accident and only drive within a small radius from home. I am sure that anxiety is playing more and more of a role. I try deep breathing, chewing gum, having food and phones on hand and also break up the trip into small goals so that it is not as daunting. I also pray out loud and sing - apparently it is almost impossible to have a panic attack whilst you are singing! I have been prescribed a tricyclic anti depressant which I am going to start (just waiting to see how I go on Mestinon, not good so far). I notice that I worry about getting home, but once I get to my destination, I am usually ok. I did collapse once and had to be driven home, so am worried about that recurring too. Yes, sounds like I am definitely a candidate for something, but after reading on this forum, not sure what will work. Tried Moclobemide which was terrible. I have been told that it is a chemical imbalance, and positive thinking will only go so far. I plan to take a med regularly to try and even out my moods. I have also gone back on the Pill as my menses made everything worse, POTS, anxiety, moods etc and I was not coping at all. It has really helped. I also have CFS, so think this really compounds all the fatigue, anxiety etc. I feel better knowing that I am not the only mum out there who is stressing in the car.