By Deb, frustrated and angry on Wednesday, October 22, 2003 - 02:57 pm:

I have a new endocrinologist, three physical therapists in different offices, and a resident doctor fresh from med school who probably doesn't know very much about hypermobility.

I have hypothyroidism, obvious and recognized hypermobility, several positive ANA tests, MVP, increasing pain, decreasing mobility, and too much fatigue to keep this all together by myself.

I'm being bounced from doctor to doctor like a hot potato. My old endo says my weight is my problem. The physiatrist says I seem to have a connective tissue disorder they haven't been able to identify. Two physical therapists tell me not to exercise. I haven't met the third physical therapist or my new resident yet and don't have a rheumatologist.

I can't work. I can't exercise. I can't think.

I need someone to help me keep it all together. Someone to prescribe medication for pain and for inflammation. Someone to help keep track of which PT is doing what. Someone to do more than send me to someone else.

I'm 33. My parents are supporting me while the world goes on outside. This is just wrong.

What do I do? I'm just about out of ideas.

By M&M on Thursday, October 23, 2003 - 01:49 pm:

Deb, have you been to a rehabilitationcentre? I mean for physical rehab, like where people go who had a car-accident etc.
My treatment is centred around my rehab. doc. (what do you call these guys in English?)
OK, I admit, he is not involved in the treatment of my gynaecological problems but he covers about everything else. He even had me tested for hypothyroidism caused by medication the gynaecologist prescribed.
In rehab they tend to look at the stuff that bothers YOU and prevents you from leading a 'normal' life, not just at a hip-joint, a wrist, a knee (or a diagnosis for that matter) and they try to find practical solutions.
It is not heaven -you have probably seen my recent posts on work and physiotherapy- but it's a start.

One other thing. I hope it makes you feel better to know that I just love residents or young doctors.
They might not be very experienced but I find them to be much more willing to look into things and research a bit. (doing that they find out lots of interesting and helpfull stuff about hypermobility)
Whereas some old, experienced docs tend to have an attitude like 'If I didn't hear about it in med-school 30 years ago it does not exist'. I know, I should not generalise like this, but looking back on the past 12 years I think the only docs that really did something for me where all under 40. And the ones that really messed up where over 55. Perhaps it is a Dutch problem, and only Dutch residents are marvellous but do not despair yet.

Good luck!
M&M

By Hamfist on Friday, October 24, 2003 - 02:57 am:

Hello Deb,

You have the right to feel frustrated and angry. It is regrettable that many "professionals" will examine you and take your money without really taking notice of your problems.

If a person has hyper mobile joints they can (a) have no problems and can demonstrate amazing things or...(b) they can demonstrate amazing joints that really have problems.

Essentially, a hyper mobile needs to keep weight off and maintain good muscle tone because the muscles control the joints and get tired easily. It is pointless going to a doctor who is poorly read in the subject. You will get bad answers and little help.

Fortunately, through boards such as this, you may find some help or some comment from a lay person who has much more interest (seemingly) than the medical "profession."

Best regards, Ian

By Gyll Long on Monday, October 27, 2003 - 12:00 pm:

Hi deb, There is very good advice here. When you are in pain and feeling that nothing makes sense write and vent to this board.

You are the expert on you,maybe you need to remind some of your healthcare professionals that you are not a "disease/condition or syndrome" but a person.

Ask for everything you are told to be written down and where possible have someone else in with you to record what is said to you, as when you are undergoing physical examination and are not feeling too good it is hard to take everything in.

Wish I could do more to help, you are not alone, best wishes Gyll

By Michelle Castle on Monday, October 27, 2003 - 04:03 pm:

I just wanted to say that the kind of doctor M&M is decribing is caller a physiatrist. They are specialists in physical medicine and rehabilitation. The professional society can be found online at aapmr.org.

I don't have one yet, but want one. From what I've read, they make the most sense to manage your care. Mine is somewhat split between a rheumy and my GP, but is mostly self-directed.

Another option is to switch from a Medical Doctor to a Doctor of Osteopathy. They rely more on hands-on healing and less an drugs to mask symtoms, and are usually better about treating the whole patient as a unit and not seperate parts. You can find them online at http://acopms.com/

Michelle
hypermobility.blogspot.com

By Michelle Cheam on Tuesday, October 28, 2003 - 08:40 pm:

I did the best thing I could for myself a few montha ago. I have seen almost 10 doctors in the last two years and most dont even want to know what the others are even doing. I went to my general practicioner and explained that I am getting conflicting orders and what might be conflicting medicines from all of my other doctors.

I signed a contract with him that was sent to all of my other doctors. It says he is the only one that can and will prescribe and medications or pyhsical therapies for me. Any new deveolpments are to be sent to him along with copies of all of my tests. This has been a life saver for me. He has learned alot about EDS for me and he filters through everything and tells me always in plain english what I am to take or not take as far as medicine or advice.

This has worked for me. Any general practicioner, internist, or even family medicine doctor should be happy to help you with this. Just sit down and tell them how turned around you feel and that you want a need his/her help filtering through everything. Chances they would be happy to help.

Also excercise is a must for us, but only when it is the right type done the right way. It can and will slow down wear and tear and our ever present injuries when we are stronger and in shape. The ethler danlos foundation in the US reccomends water excersise. It is very light resistance, can be a cardio workout, and is inceridebly easy on the joints. It works well for me but check with a doctor first.

Hugs,
Michelle C.