Feeling really down

hi, i dont usually post. i mostly read others but today im really down.

heres partof my story. in 05 i was dx with dialted cardiomyopothy so i have a pacemaker with defibiulater. i have fibromyalgia, migranes and psoriatic arthritis. i have a huge area on my shin of plaque and in my ears on my scalp and elbows..nowbit is spreading around my back and sides even under my breasts. I have tried several meds including methotrexate, enbrel, sulfasaline , currently on humira injections.. nothing seems to help. I know my husband, of 18 years is tired of it all because Im tired of it too. he thinks there should be one" fix all" med. and all i need is excersise. as he goes to the the gym daily... There are days i cant get out of bed...let alone go to work, or excersise.... putting alot of stress on both of us.. we are planning a famiky vacation in Aug. im dreading it. what if im having a flare and cant get out of bed?? now dr is suggesting remicade, an infusion and botox for my migranes. at this poinypt im willing to try anything.. but again my husband expects instant results...

wow. sorry to ramble on . i have no one to talk to . sorry so long. any words of encouragement r suggestions for meds would be greatly appreciated...

thanks for reading

I'm sorry to hear you're having such a hard time getting things under control. I wonder how much improvement you might get if the migraines are under better control. It won't help with the PsA, but it might very well help with the fatigue and obviously with the headaches.

I'm curious, you said you've tried out a lot of different medications. These have all been for a good period of time, at least 6 months? Some of the meds can take quite a while to start working.

Regarding your husband, this type of discussion comes up again and again. Education might be helpful, but you may just need to adjust your expectations as well. In addition, you may want to consider therapy for you, and possibly for him as a part of it. Just some thoughts.

I'm going to get into trouble here I just know it. Dilated Cardiomyopathy as you probably know is one of a number of things that happen when your PsA starts to attack the organs. Absolutley try the remicade. Also add a healthy dose of Coenzyme Q10 (its one of the FEW supplements that actually has evidence behind it that it works)

Ordinarily I'd suggest you tell your husband to sit on it. NOT THIS TIME. His expectations of a pill may be off. But I can tell you from personal experience including being on the TRANSPLANT LIST at one time, that unless you get into a serious cardiac rehab program things will get worse. A rehab program is different that just going to the gym (although you do many of the same things) You can strengthen that muscle once you do THEN the meds will work (not to mention the migranes will go away, the fatique will reduce etc etc.) BUT YOU CAN NOT MISS A DAY no matter how S****y you feel

Lets be blunt. Most of us used to die with in 3 - 5 years of the Dx we have (Cardiomyopathy). I even took my farewell vacation with my wife. (I hadn't yet gotten my PsA diagnoses) We die from either arrhythmia OR congestive heart failure. Your implanted devices will take care of venticular tachy or bradyarrhythmias. Taking care of heart failure is UP TO YOU. There are a number of programs around the country. The best is in Missoula Montana at the International Heart Center. I know Hills Physicians Group in Sacremento and UC Davis have been involved in the education program with them and developed similar programs. I think you are near them aren't you? You can in most instances stop and REVERSE the heart disease. BUT you need supervision to do it. You can't simply "go to the gym"

Your husband may be a whole lot MORE sympathetic if he knew what was at stake. Patient (and family) education is a keystone of these rehab programs.

I can only speak for myself when I say the meds worked better, the flairs fewer, and my mobility improved. When I decided to FIX what I could. I quit the narcos (which really were making things worse) and prepared to live instead of prepared to die. It was PAINFUL (at best) and the hardest thing I have ever done (and I have done some really HARD things) You can do it a piece at a time just like eating an elephant. Set your mind AND goal now to have a great vacation. You can be ready. if you need to rent a scooter when you get there DO IT. Don't forget to take your handicap parking permit if you have one. If you need a cardiologist who will give you a script for single malt scotch, I'' give you his number (he a collector too, as reward for completing one of my rehab phases I was invited to a "tasting" which involved a single barrel 30 year old private stock - unbelievable)

HUGS momof4521! It's difficult when people we love have no clue what it's like to live with the illnesses we live with. Remicade has made all the difference for me - I hope it does for you as well. Talk to your doctors - and encourage your doctors to talk to each other - about a plan to get you well and what that would entail on your end. The healthier you can get yourself (with food, supplements, exercise in whatever form is possible, as well as emotional and mental health, etc.), the better the meds will work and the better you'll feel.

thank you all for taking to time to read and reply.. it does mean alot to me. im honestly surprised anyone did..

i will take all to heart. i know i need to be more proactive. still waiting for insurance to approve remicade. i will keep you posted.

Kim :)