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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Im so frusterated you guys. This could honestly be the end of my 8 year long relationship and with all the other issues going on, this lack of compassion for RSD may just be the last straw.

My girlfriend just doesn't 'get it' when it comes to this disorder. If it was just this, heck, that may just be enough alone, but there are other things too, that are normal issues, you know, bumpy spots that relationships work through eventually, but her complete 'black and white' attitude is just too much. This may be a long post, because I have a lot of venting to do.

My RSD didn't come on as quickly as shes acting like it did. I've had it for years! For years I was tested over and over and over again. Test after test. Emergency room after emergency room. Poked and proded. I was called hypocondriac, I was told I had this mystery virus after another... I was told it wold pass time and time again... I was dismissed. I was made fun of by freinds and family constantly year after year for being sick all of the time. I became the sickness joke.

No, this illness didn't just kick in after it had a friggin name.. After it was diagnosed, yes, the symptoms really flared up and peaked at an all time debilitating high, and now shes giving me hell, saying I let the diagnoses beat me down and I gave up. The reason it finally was diagnosed was because it got so bad, that it didn't go away! My neurologist took one look at me, and listened and said, there is no doubt in my mind, you have RSD! And the unfortunate thing is, its spread to your full body!

Immediately he started me on the Topomax and Oxycontin and told me that he intended on increasing the dosage as quickly as he could so that we could try to get this into remission if at all possible, and as quickly as possible. You all know the story, and how it goes.

That was June 12, 2003, that I was finally diagnosed. Those meds that I started taking really did a number on me. The insomnia, the mood swings, the general discomfort, coupled by the discomfort (put mildly) from RSD. Now over the years, I've learned not to complain much about my pain and agony from being sick. Its just not acceptable anymore, they've heard it all too many times, and there was no reason for it at the end of the day. When they would ask what the doctor said it was, the answer was always "nothing.. they dont think its anything"... How pathetic is THAT??

Anyway, my body has never betrayed me as badly as it has the past few months and especially these past two weeks. I am a mortgage lender and blessed enough that my corporate office has based me working out of my home. I work for 100% commission though, and of course, that has slipped too, as I just dont feel well enough to be the person that I used to be.

My girlfriend just doesn't understand this. She says that if I feel well enough to visit with my mother, as in, sit and talk with her, then i'm well enough to work. Work work work. It seems to me, that its her number one priority although she makes enough money to support our family. Oh, I didn't mention my mother came into town for three days, and I was going to visit her for one of those days at my sisters house. Im sorry, I left that out.

My pay has definatly decreased in the past few months, even before I was diagnosed. The reason was because I was just not feeling well at all, and I just could grasp it at all! My memory was failing me, I had no energy, I was swollen like a blimp, and my body hurt like hell! If you look at my numbers you can see when the disease really started kicking in.. you can actually see it in my work performance!

My girlfriends best freind at work has a wife who is my age who has MS. He just had to purchase her a wheel chair and she had to quit working, so that the time that she can get around a little bit and enjoy her kids a little bit before shes completely imobolized, she wants to take advantage of. Well her best freind is really pissed off at his wife for wanting to quit her job, even though he can support his family too. Even though shes in pain, and on her way to completly being handicapped. My girlfriend tells him day in and day out what an ass he's being and how out of line he is.

But to me, she tells me that RSD isnt ANYTHING like MS. It doesn't even compare. I tried telling her that it does too compare! That she is doing the same thing that he is doing to his wife, she is doing to me! I feel like my bones have been deep fried, that my muscles have been twisted and wrung out and replaced incorrectly with the nerves all wrong, I told her that my skin feels like its on fire, and that there is hot liquid under all of it! you can SEE how swollen my feet and hands and legs are! you can SEE that! I may smile at you, and talk to you, but inside, im feeling like im dying!!!!

She says I'm using RSD as an excuse, and that I gave up to easily. I tell her that shes wrong, it does. She said she was really worried when they thought I had Lupus or MS, but was relieved that it was ONLY RSD. Please help me convince her that this is a serious disorder. Im copying and pasting your replies on a word document and giving it to her. I've explained to her that a lot of people w/ RSD, just like the others are on Disability as well, a lot of them are unable to work too. AND its the MOST painful.

Then she started telling me that my meds do not cause my insomnia, its ME not regulating my sleep schedule. She said that shes worked graveyard all her life, and she can regulate her sleep schedule, so she knows it can be done. The only reason I dont go to bed at night, is because I dont want to be with her. At this point, I DONT!

Anyway.. I know I'm all over the place.. but I need some help in explaining the seriousness of this illness. This is not the flu for Gods sakes!

Dear Lacei, this is one note you may not want to show your girlfriend. What gives her the right to tell you how you feel? Hasn't she been with you long enough to know by the look on your face that you are in pain? I mean no disrespect to her because I know it is hard on our spouses to deal with us, but we are the ones in pain. Our lives are built around it. What we can do - when - will we be able to do it - who will be disappointed if we can't....My husband is so sick of me saying I'm sorry he begged me not to say it. He gets it. Maybe if she went to your doc appt's with you - or - did some research on her own. I have forwarded some of these posts to my husband, other family members and friends. You should let her know that many of the people with RSD are unable to work. You matter Lacei. Your life counts. You need support, understanding and love. This stress is only going to make your symptoms worse. It is so hard to be hurt by the one you love the most. Maybe if she would educate herself on RSD she would begin to understand what you are going through. How about couples counseling? Maybe she could talk to your doctor. He sounds like he would take the time to explain this to her. She may have her own issues to deal with also. Perhaps she is angry because of what RSD has done to you and as a result your relationship. What ever her reason is, there is no excuse for her treatment of you, the person she loves. I hope I didn't offend you but that is how I feel. I don't know what I would do if my husband turned on me. It's the ultimate betrayal. I wish I could give you a big hug. You sure sound like you need one. Please take care. Remember Lacei, You matter - You count.

There is always hope....

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