I am in the medical field and with with chronic pain patients everyday. I am only 29 years old and am having a hard time getting my Rhuematologist to take me seriously about my pain. I am too scared, I guess is how to put it, to ask for something for something for pain. I see my patients everyday and feel as though my pain is not as bad as them but sometimes it is. I think my age throws the dr's off but again I am too timid to ask for help. I will be seeing him next Tues and desperately need some advice and/or encouragement to stick up for myself and tell him how I really feel. Anyone else have this problem? Please let me know. Thanks. -K

Hey Krista! I know just how you feel. Before I was diagnosed with EDS it was extremely difficult to get a doctor to take me seriously. "well your X-rays and blood tests were fine.... I don't see anything really wrong with you so you shouldn't be needing pain pills..." after I found out that EDS was the cause of all my problems, the doctors all of a sudden seemed to understand and actually tried to help me.

When I first meet a doctor, I show them my hypermobility. I'll pull my thumb back to my arm or show them my neck hypermobility and they are usually in shock after and think "wow, you must be in pain" That's one of the good things about EDS i guess, it's so easy to "prove" that you do in fact have a joint problem.

In addition, I emphasize how much the pain has impacted my life. My primary problem is neck pain and associated headaches. When I first started going to doctors I was still in school (although it was EXTREMELY difficult to pay attention) and the doctor just though oh, well, she can't be in that much pain if she is still in school and going out. But them when I told him I had to drop my courses because of the pain he suddenly started to believe me. Weird, I know. but Basically be sure to let him know how much the pain impacts your life. What you've had to give up because of your condition.

And lastly, doctor shop. Some doctors are just plaine jerks, but there ARE doctor out there who actually care. Pain specialists have been the most understanding in my experience.

Hi,

I am 26 yrs old and was in constant pain too!! It felt at times like why am I whining and at other times the pain was so severe I couldn't stand it. It was affecting every area of my life because the pain was so bad.

I finally told my dr I couldn't take the pain..... I had my geneticist call and talk to my dr about eds pain and that it was real. First of all let me tell you my dr did blood tests that revealed I was vitamin d deficient and I started high doses of prescription vitamin d , this took away 50% of the pain... I still have pain but this helped sooo much!!!

My dr doesnt like narcotics, but is ok with ultram. So I take Ultram as needed and he agreed to 1 vicodin es every night as needed for pain and if in a ton of pain I can take a vicodin during the day. It seems to make the pain liveable...

I did try a pain specialist , it was a joke.....he messed my hip up by pulling too much and then on top of that wanted to put me on all kinds of meds and try morphine for pain, my family doc flipped and said morphine is for patients who are on there last leg or dying... I dont want to be an addict so I only take the minimum and it helps...... Be bold at your dr appt ask for what you want and if she or he wont listen find an advocate... Good Luck!!

The thing that I find frustrating is that we are often labeled as "drug seekers" when in reality most of the things that "drug seekers" look for do little to nothing for us. Just because I say hydrocodone doesn't work for me, doesn't mean that I want a higher dose of it or something stronger; I want something that will work ~ maybe a different type of pill/patch or even shot. Hell, if someone told me standing on my head for 3 hours a day would work I'd be up for it. Being young and "looking healthy" doesn't help either. Maybe if I dyed my hair grey and drew some wrinkles on my face they'd take it more seriously.

Thanks for the advice. I went to my appt last week and poured my heart out to my Rh. I told him if he couldn't help me then I wanted to go to pain management. He said, " That's not the way we want to go with this. Take a 3 week steriod pack and come back in two months." It is a bunch of BS. I'm sick of it because we don't look sick but I have to physically pick up my right leg to cross my leg. I am 29 for god's sake! Oh well, someone will help sooner or later. Just gotta find to the right kind of dr. Thanks guys.

You may want to see one of the EDS pecialists in your region...either in Balitmore or Wake Forest University in North Carolina

Go to a pain management specialist and don't ask him, TELL him that you are in pain. You will probably have to have all sorts of proof likes faxes and letters and such but if you can find one (there is a great one in Richmon
VA who is aware of EDS. My daughter has a realy bad case 9 out of 9 on the sace, has had 8 knee surgeries and two shoulder ones and he has her on af all things, Methadone and it WORKS!!

Jane:

Who is the pain dr in Richmond?

The one we use is Paul Spector but be prepared for the fact that he does not take insurance...if you are not on insurance you can file yourself. He has opted out of medicre so I cannot file myself and my secondary carrier will not pay if medicare does not pay. I don't know the cost of a new visit but a pain visit with him is usually $125.00
There is another one at Johnson Willis Hospital by the name of Peter Duke Crane and he does take insurance.
I am giving you both but I personally pay the cost of Dr. Spector since he is that he (he is a Doctor or Osteopathy so he understands the body) and is board certified in Psychiatry, Pain Medication and Addition and Substance Abuse. He also teach ast MCV, the local medical school. Of all the things that my dauther has been on Methadone works the best. Also be aware that you are the patient and if he tries to dismiss you tell him to sit down that you are not through yet and he will!!! He has met us at his office on a Saturday morning to give us drug samples, etc. He can, I must warn you, be very late with his appointments...I have waited four hours before but if you need to be in there that long with him he take the time for you. He can be a real jerk sometimes but I still love him and have been seeing him for 15 years!

I meant not on Medicare.

Jane..thank you...I copied your reply to another group
EDS and Healthcare Professionals

Get a list of doctors that you know (from friends, relatives, co-workers or neighbors) pick up the phone and start dialing...
Do you know what EDS is?
Do you BELIEVE in EDS?
Have you ever dealt with someone with EDS?
Are you willing to learn?
If they answer no dial the next number.

I was in a lot of pain and so frustrated a couple months ago and that's what I did. The third doctor I called was my Internist who had prescribed my "fat pills" to help me lose weight after my boys were born. He had a colleague that has a couple patients with EDS and he himself said he would learn. We made an appointment for the next week. When I finally sat down with him I had Brad's Book with me and I had highlighted everything that pertained to me. I immediately turned it to the page, showed him all 9 Beighton tricks and started to cry as I asked him to help me. The doctor took the book with him and has been helping me and so accommodating ever since.

I was lucky it was my third call, but I was prepared to call for as long as it took. Krista, get angry and get motivated to find that right dr for you if you don't think your Rh is it, get your med records and go! There are doctors out there, we just have to find them and educate them.

***Big Hugs***

the best thing to remember with doctors is that they are YOUR employee while you are seeing them and they have to listen to all that you have to say. I have told mine to sit down, I'm not finished before and he does it. YOU have to take charge of your own situation. Do NOT let anyone else do it. You are the one with the pain, and God only knows shat else so tell the
doctor to just sit down and listen and then spill your guys and tell him everything. I wish that I could find an EDS specialist but so far all I have come across is a Physial Therapist but we need doctors who understand whatwe all go through.
Call several until you can find one who knows something of EDS. My daughter went to a Maxo-oral specialist a couple of weeks ago and he took one look at her and told her that she has EDS. Know how he knew? Little or no earlobes and unfortunately she need a jaw transplant due to TMJ and is only 32.

Find a Doc that's already familiar with EDS would be a great boon. Unfortunately, it doesn't seem that common. I remember being shocked that my orthopedic (for my knee) heard of it. He was assessing my arthritis in my knee and was spinning his stool away to make a note when I mentioned that my girls have EDS. He immediately stopped his stool mid-twirls and turned back to me and said, "Oh, really?". (Kind of the medical version of a double-take.) He (aside from the geneticist) has been the second Dr. I haven't had to explain it to. (The Children's Eye physician was the first.)