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Old 07-05-2007, 07:10 AM
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dreambeliever128 dreambeliever128 is offline
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Join Date: Nov 2006
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15 yr Member
dreambeliever128 dreambeliever128 is offline
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dreambeliever128's Avatar
 
Join Date: Nov 2006
Posts: 2,088
15 yr Member
Default Hi Sue,

It's too bad you can't find a place for the 3 of you to live and just let your sister fend for herself. I do know though since he's Ray's Mom that won't happen. He couldn't do that.

As far as the CPPS, I have it and I complain about it here.

I just wanted to tell you that there are a lot of Drs. out there now that are dealing with CPPS. I have a Urologist that has helped me with it, I had a Gyno that specialized in it but he's moved to Ca. now and I just loved him. I have been to Pelvic Pain Drs. University Hospitals have Pelvic Pain Drs. in them.

There are also Physical Therapist that help with CPPS. I also have RSD, Lavator Ani Syndrome, Interstital Cystitis and several other things going on in the pelvic area that they have diagnosed.

I have never gotten mine calmed down like I need but it is doing better. The Urologist seem to be trying to do more for it then anyone. Mine have done treatments where they put meds inside my bladder and all of the other areas. The ones my Gyno did helped me but the ones the Urologist did made me worse. I believe they used different meds and since my Gyno left I couldn't get his list of meds he used.

My PCP gives me triggerpoint injections. In the pelvic and hip area and now I am also getting them inside to help calm the pain down. My goal was to get off of the Methadone full time but it's most likely not going to happen.

I love the Methadone because of there aren't too many side effects but I am on a very low dosage but it does the job to a point. If I go off of it, I can't walk because of the pain. It starts running down my legs and to my feet if I go off of the Methadone and then I can't walk for the pain.

I'm just trying to give you some info that might help him to get his pain level down to where it's tolerable. I know what he's going through to a point. I know they have treatments that are different for men then women but I know they use the same meds to help with it.

The Urologist gave me meds that turned my urine orange and so many more I can't even name them but I just can't take any of it due to side effects. If you Nephew can take meds then he can get more help with that then I did. I will say though, I have found Drs. that are dedicated to help people with pelvic pain. More so then the RSD.

I'm sorry you are going through so much. I know where you are at. Bill became disabled not long after we were married and I became disabled 20 years ago so we struggled all of our life as far as finances go. It's never easy when you have 2 ill mates in the family.

My daughter had it the roughest because she couldn't have what others had but I was able to work up until she graduated so she did get the car and some nice second hand clothes. She's all the better for it though. She doesn't expect things to be handed to her on a silver platter.

I'm sorry your Nephew is going through this so young. I feel bad for the younger people who become ill at a young age. They have so much longer to go through this and they will always have a hard time living a normal married life and working to support themselves longer.

Hope things calm down for you soon. If you need any info on CPPS just let me know by PM and I will try and help you.

Take care,
Ada
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