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Hypermobility Forum for people with Marfan, EDS: SYMPTOMS: New to the forum.
Top of pagePrevious messageNext messageBottom of pageLink to this message   By Heather on Thursday, October 14, 2004 - 08:21 am:

Hi, I'm 29 yrs old. And I feel older.

I was dxd with Asthma at a very young age. Have battled that all my life. I had always been "flexible" and constantly had overturned ankles and broke one as a child. Then as a teenager, I dislocated my knee. I have had 3 dislocations for my knees (2 on left, 1 on right) and I still have problems with this dislocation. I have had TMJ problems and it has continually gotten worse as well. My last dentist recommended me to do exercises throughout the day (hard to remember when you are battling ADD) because I clench my teeth during the day. The best thing that has helped my TMJ problems and clenching was the tongue piercing I got last year. I play with that (an acrylic one) as much as I can instead of clenching my teeth due to stress.

When I walk, sometimes it feels as if my lower half has separated from my body - my hips and below. I am so tired of being in pain. It's a pain that is bearable for the most part, however, prolonged pain makes me tired. And when it flares up, it is unbearable and I take pain pills (usually just Tylenol PM or the like) so I can sleep at night. I try to avoid using pain meds so that I don't get addicted.

The latest disturbing development in my health care is the fact that my menstrual cycle has just decided to take a turn for the worst. I had my normal week long cycle, then nothing for 2 weeks, then again normal week long cycle. This happened for a month. Then I bled for a month. My GP put me on the pill to get regulated and finally it is back to nothing. Hopefully normal.

Any help would be greatly appreciated it. I'm a bit worried about this.

Thanks,
Heather

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Michelle Castle on Thursday, October 14, 2004 - 03:29 pm:

Heather,
I read in your other post that you haven't been diagnosed yet. I encourage you to talk about all of this with your doctor. Do you take anything else for pain other than Tylenol? Have you tried any of the anti-inflammatory medications?

Michelle

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Heather on Thursday, October 14, 2004 - 05:05 pm:

I was given Vioxx for the menstrual problems (in addition to the pill). I have taken Bextra and Voltram (sp?).

My question is, how do you ask your doc about something like this without sounding like a hypochondriac? I just want to be free of pain, know what is wrong, and be able to try treatments. I have a doctor's appointment coming up regarding the menstrual issues, so I will bring this issue up then as well.

I also have keloid scars... I'm not sure if that is the same as atrophic scarring? I just thought it was something else I was dealing with due to my surgeries.

I know I must sound like I am trying to diagnose myself... really, if I don't have this, I'm happy... it's not knowing what is wrong that drives me up the wall.

Thanks Michelle for the info.

Heather

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Michelle on Monday, October 18, 2004 - 08:01 pm:

Heather,
I worry about telling my doctor stuff too, for fear I sound like a hypochondriac or just an anxious patient. But you seem to have enough of the symptoms to justify the conversation. How did you hear about HMS, EDS, and the like? Maybe you can approach the conversation from that angle. If you feel uncomfortable saying "so I was searching the Internet...", then just ask the question: "Do you think I might have a condition that explans all of my problems, like the Ehlers-Danlos Syndrome, or something similar?" if you want to, you can download some brochures about EDS from the EDNF website at ednf.org.

Michelle

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Heather on Tuesday, October 19, 2004 - 08:48 am:

Michelle:

Again, thank you so much for the help and support. I was just about to cancel my docs appt because my co-worker's mother is about to pass away. (I am sure that I am a bit nervous bringing up the subject to the doc.)

Thank you for the information about how to talk to the doc too.

Best wishes,
Heather

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Heather on Tuesday, October 19, 2004 - 08:50 am:

Michelle:

Thank you so much for the help and support. I was about to cancel my docs appt (prolly a bit nervous) until I read your post.

Again, thank you for all your information and help.

Best Wishes,
Heather


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