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Help! I'm Going Mad


pippamc1
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Hi everyone, this is my first time posting on here - hope it all makes sense!

I have had CFS/M.E and IBS since pregnancy in 2006 and recently been told I developed POTS soon after. This whole thing is really confusing.

I have a gorgeous six year old girl, though it has been hard going bringing her up. I got pregnant last year and was so ill and bed bound with hypermesis, CFS relapse and awful POTS symptom. No one helped and I ended up having a termination, which I still can't believe I did. ANyone else had simular experiences? ANy advice for future? It seems the standard advice for POTS is no pregnancy - is this true?

I have been quite stable for a while and work a few hours a week, which is great. I don't do the crawling thing very often, haven't fallen over so often, although my blood pressure is all over the place and balance can be terrible. My heart races at various times during the day and night, nausea can be frustrating, and I don;t really have a socail life cos I'm just too exhausted. But I do care for my little girl, so I'm really lucky. Does any of this sound familiar to anyone? My list of symptoms is too big for here - as I'm sure are most peoples, I would just like some reasurance I'm not going mad and am not as alone as I feel.

Any comments would be welcome

Thanks for reading all this

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Hi,

Welcome to the forum!! :)

Do you seee a specialist who is familiar w/ POTS??? Seeing a physician who is familiar with what we got makes a HUGE difference. On the main page of the DINET site there is a Physician List and it lists the doctors by state.

As for being terminated, I was from my last job. It's a long story (I was fired while on Short Term Disability Leave) but basically it was because I missed too many days, even though they were medically excused. My manager also wasn't the most understanding person.

Also, don't feel as though you are going mad either! Again, on DINET's main page it has a list of symptoms, what helps and what doesn't help, etc. You should look it over when you get a chance because it is very helpful.

I am curious also if you are on any meds for POTS either??? I am on a beta blocker which helps with the tachycardia (rapid heartrate) and Midodrine (vasoconstrictor, raises BP). Those meds have helped. I by all means don't feel 100 percent, but I am feeling better than I was before.

Anyhow, I hope you find a good doctor whose familiar with POTS, if you don't already have one....

Jacquie

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Pippa,

Welcome to our "special" group of friends! I'm sorry you are suffering all the horrible symptoms we have to put up with and how it affects our lives. As for your pregnancy, how difficult that decision must have been. I guess I've been told by my doctors not to get pregnant but they've never told me I could die from it, just that most people who have this have very difficult pregnancies.

You are not mad and difinitely not alone. We are all here to support each other with all the ups and downs this brings us

Hugs,

Tammy

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Hi,

Well your definetly not the only new one to this. I am so sorry to hear about your pregnancy. I got diagnosed with pots 6 months after I had my son last year. I can tell you, you are definetly no alone here. I just posted yesterday and I have never felt so not alone in my life..... If you ever need a shoulder to lean and cry on I am here!

<3

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Welcome Pippa-

I hope you find support here and I am so very sorry for your loss. I agree that the decision must have been most difficult for you. Did you receive any IV treatments for your hyperemesis?

I am not sure about individual experiences with POTS and pregnancy, but I do know CFIDS pts. who conceived and did well in pregnancy. I think everyone is dift. Some do well, some do not. Many worry about relapse after baby is born, due to added body stress and lack of sleep,etc. This is difficult even for healthy people. Some people have more physical and emotional support than others as well. So many factors can play into it I believe, diet nutrition,etc. etc. Difficult, personal decision for all with illness.

I am glad you are able to care for your daughter and that you are managing work. I have great difficulty with balance, nausea, heart rate and bp all over the place- you are not alone.

again, warm welcome to you---------- :)

I would love to know how many people out there have balance problems-----

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Thankyou all so much for your kind words and encouragement.

As you all know this is such a lonely condition, and those associated with it. I do not have any doctors helping who are familiar with POTS - I live in england and it seems to be fairly unknown here. Its very frustrating. A great doctor diagnosed the condition and gave the first support I'd ever had with the CFS, but there does not seem to be any help now.

I will keep an eye on the goings on in the forum, I'm hoping to gain alot from it.

Thanks again

Pippa :rolleyes:

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Hi Pippa and welcome,

I to begain these symptoms with my last pregnancy...but I was told it was just the pregnancy. When it continued 2 years after, I started looking for answers. I haven't been DX, due to no insurance...but I was told that it is most likley, since they ruled out any other illnesses that could cause these symptoms.

It is a big deal careing for a child! Be proud of yourself!

Take care,

Amber

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