[ckinsey]

I'm currently 17 weeks pregnant. It was unexpected, but wanted. I miscarried last year and it really screwed up my body and I didn't even know if I could get pregnant again. I've been struggling with health problems that got a lot worse after the miscarriage. I had a doctor who thought I had fibromyalgia and put me on medication, but it didn't help. I got so bad that I had to quit my job in January. I started going to a new doctor later on who did a bunch of blood test. My thyroid levels were a little off, but in normal range and he didn't want to do anything because we found out I was pregnant.
Some days I feel OK, but mostly I feel horrible. This is the second day in a row that I need to buy groceries, but feel too bad to leave the house. I'm exhausted all the time, I have muscle and joint pain, lightheaded, memory problems, tachycardia and mitral valve prolapse. Pregnancy is only making my symptoms worse.
We are going into debt now from medical bills and I don't know how we are going to afford a baby. I'd like to get on disability, but I'm not sure I even can. I'm also afraid to take medications that might hurt the baby. I just desperately want to to get better and to do a good job at providing and taking care of this child.
Does anyone have any advice or can relate to me?

 

[Memento]

Hi,

Do you have unusually flexible joints when not pregnant? I am not a doctor, but to me your symptoms sound a lot like Ehler's-Danlos Syndrome, of which the hypermobility form is most common. I have it, so am very aware of the problems associated with it!

It's a genetic disorder where your body produces faulty collagen so the structure of your connective ends up being abnormal. This can have a big effect on your joints because the ligaments which are supposed to support them are too stretchy, so they bend further than they should and muscles have to work much harder than they would for a normal person just to hold them in place. This makes you very tired and can cause a lot of pain in the muscles and joints. Mitral valve prolapse is common too, and so is lightheadedness, dizziness and tachycardia (especially when you stand up). This is because blood vessels are too stretchy and blood tends to pool in your lower body when you are standing, as well as because the nervous system has trouble regulating heart rate etc. (dysautonomia), though the reasons for that part aren't fully understood.

Your average doctor is useless at diagnosing Ehler's-Danlos because it is fairly rare, and as you've mentioned the symptoms are a bit vague and can be attributed to other disorders unless you know what you are looking for. There are loads of websites with diagnostic criteria and more information you can look at, for example:
http://www.ednf.org/hypermobility-type and http://www.ehlersdanlosnetwork.org/hypermobility.html

I'll stop writing before this becomes a stupidly long post, but I have plenty of experience with it alongside pregnancy (it does make it worse), and also of seeking diagnosis and getting financial and medical support if it's of any help to you. I don't want to dump loads of information at once. Just let me know

 

[ckinsey]

Hi,

Do you have unusually flexible joints when not pregnant? I am not a doctor, but to me your symptoms sound a lot like Ehler's-Danlos Syndrome, of which the hypermobility form is most common. I have it, so am very aware of the problems associated with it!

It's a genetic disorder where your body produces faulty collagen so the structure of your connective ends up being abnormal. This can have a big effect on your joints because the ligaments which are supposed to support them are too stretchy, so they bend further than they should and muscles have to work much harder than they would for a normal person just to hold them in place. This makes you very tired and can cause a lot of pain in the muscles and joints. Mitral valve prolapse is common too, and so is lightheadedness, dizziness and tachycardia (especially when you stand up). This is because blood vessels are too stretchy and blood tends to pool in your lower body when you are standing, as well as because the nervous system has trouble regulating heart rate etc. (dysautonomia), though the reasons for that part aren't fully understood.

Your average doctor is useless at diagnosing Ehler's-Danlos because it is fairly rare, and as you've mentioned the symptoms are a bit vague and can be attributed to other disorders unless you know what you are looking for. There are loads of websites with diagnostic criteria and more information you can look at, for example:
http://www.ednf.org/hypermobility-type and http://www.ehlersdanlosnetwork.org/hypermobility.html

I'll stop writing before this becomes a stupidly long post, but I have plenty of experience with it alongside pregnancy (it does make it worse), and also of seeking diagnosis and getting financial and medical support if it's of any help to you. I don't want to dump loads of information at once. Just let me know

I'm not all that flexible, but I've had problems with my shoulders, elbows and hips all my life. They hurt often and pop in and out of place very easily. Usually with normal movement. Dysautonomia is something I've read about a lot. I don't think I have POTS, but there is something definitely wrong with my nervous system. My tachycardia is constant and my nervous system is super sensitive and over reactive to everything. It drives me crazy. I've had so many doctors tell me its anxiety, but it's not. I've even tried some of the medications and they often made me a thousand times worse.

 

[Memento]

I'm not all that flexible, but I've had problems with my shoulders, elbows and hips all my life. They hurt often and pop in and out of place very easily. Usually with normal movement. Dysautonomia is something I've read about a lot. I don't think I have POTS, but there is something definitely wrong with my nervous system. My tachycardia is constant and my nervous system is super sensitive and over reactive to everything. It drives me crazy. I've had so many doctors tell me its anxiety, but it's not. I've even tried some of the medications and they often made me a thousand times worse.

My shoulders and hips cause me a lot of trouble too. My shoulders seem to be almost always not quite in place and with very little movement come almost completely out of the socket (for example lying on my side in bed) and I went through a period in the teens where my hip would clunk in and out with every step, but that comes and goes now though I very often have pain there. Most of my pain ends up in my back these days, though I have a brace on one of my knees now due to it hyperextending backwards and my kneecap being very loose and the cartilage getting damaged. My elbows are one of the few places that seem to be held in place fairly normally, but they used to bend back a lot when I was a child/teenager.

I also have sensory processing problems so too much light or noise (or just specific sorts) leave me feeling very agitated and I am very sensitive to touch (I have to shop for clothes by feel rather than look, and I always wear inside out PJs at home for comfort!). It does make life very hard. My body seems to have problems regulating stuff like temperature and blood sugar level too. It really sucks feeling like your whole body has been put together wrong. I do suffer from anxiety sometimes, but often my body has what I call "physical anxiety" where I don't feel emotionally bothered but my heart is racing and I feel slightly sick and agitated.

I fell pregnant with my son when I was 18, and was in a lot of joint and muscle pain as the pregnancy progressed. I have done a lot of research since and it seems the problem is that the relaxin that all women produce during pregnancy to help make the pelvis more flexible acts on already much too stretchy ligaments and makes it all worse, which makes sense. It also seems that for some people the body doesn't recover from the changes the hormones and weight of the baby caused. Because relaxin production peaks at 14 weeks and before delivery even if you have a miscarriage the potential is there for your body to be affected by it. I had that happen even after a fairly early miscarriage. This is helpful: http://hypermobility.org/help-advice/pregnancy/
I really want another baby soon, but I'm very worried about how well my body will cope. I seem to be having increasing problems with age, and although I'm only 26 my 80+ year old grandmother is fitter than me! I will very definitely make sure I get referred to a physiotherapist who knows what they are doing very early in pregnancy. I imagine that using maternity support belts would make quite a lot of difference.