Blood pressure tests

[Moons]

I have Milroy's with full body lymphadema. This has been untreated for 53 years. All my life my parents told me I was over sensitive and just needed to toughen up. So I thought everybody hurt like this. My husband of 43 years left me three years ago because I had was fat and no longer any fun (meaning I never felt like going out dancing anymore). When I would try to talk to him about my issues he would say I just needed to lose weight and exercise more. He would tell me we could not afford for me to go to the doctor. After the divorce I found a little bit of backbone and started trying to find out what was wrong with me. Now I'm trying to find a doctor that knows what the hell I'm talking about. One that could at least spell lymphedema would be nice. The only reason I even figured it out is because a long time ago I had an eye doctor tell me I probably had Milroys and if I ever had a problem with swelling I needed to check it out. I had it at birth, I always wondered why one of my baby booties was so much bigger than the other.

I just came from the local University Medical Center (charity) and I almost ended up in a screaming match with her over using a blood pressure cuff on me. How do you get them to understand?!! She said it was more important to see if I was going to have a stoke than any damage done to my arm. My blood pressure has always been lower than normal but I guess because of my size no one ever wants to believe me. Of course because I was so upset at them insisting on taking it, my blood pressure was high.

I am just at my wits end. The pain is driving me crazy. It took me 2 months to get this appointment and all they did was take my info and refill my thyroid prescriptions. But gave me amitriptyline for pain. They will send me appointments for various clinics in the mail. I'm sure that will be a couple of more months waiting. A couple of more months of pain. And of course my swelling was way down, lower than it has been in years. Just like trying to take a car to a shop and it won't do that crazy noise for the mechanic.

I am just so very frustrated. The pain has driven me to my wits end. I'm so tired of telling people what I have and them insisting it is something else. I have been trying for a couple of years to find a doctor to treat me, I had one doctor tell me there was no need to come back and another doctor (actually a friend) asked me what the hell I wanted him to do about it.

About two years ago I did see a foot doctor that diagnosed the lymphedema but I have moved so he is too far away now. He did prescribe MLD and I responded well in my legs, only problem was, as usual, it just moved into my abdomen. I do take very good care of my skin and do what massage I can myself.

I'm sorry if I'm rambling, I'm just at the end of my rope. I guess I just had my expectations for today a bit too high. Thanks for letting me blow off some steam.

I also want to tell you how grateful I am for this website. Thanks for giving me a safe place to vent I feel better already. If I was a drinker I think I would go out and tie one on. I gave today's doctor the web address, since she had never heard of Milroys (geez I had to spell it for her) and I'm not even sure she really knew what lymphedemia was.

love you guys
Diane

[blubrdfrend]

Hello Diane, I guess we all have our horror stories. I once had a doctor tell me " If it hurts, don't walk on it".

[Moons]

LOL thanks blu, and it took a doctorate to give you that gem of advise huh. Sounds like something from a vaudeville skit.

[ChristineKeenan]

I fully understand about the blood pressure tests. I end up with bruises as soon as they take off the cuff if they try to take it on my upper arm. I let them use my lower arm (insist on it if they have to take it) - the wrist is even better. It's wherever it hurts less.

My favorite Dr quotes.... "well, I've never heard of that, so it must be rare and the chances of you having it are slim" (I have lipedema, lipo lymphedema, and dercums disease - yup, rare)

But my all time favorite....after 25 years of searching for what is wrong ...... "it's all in your head"