Hi all my name is Larry---My wife has been on this site before I think and is known as Gizzy or Kenzergirl not sure which...She has had the absolute worst time of it the past couple of years..The doctors just can't seem to figure out what is up with her..One visit they think she has RA then the next they don't know whats wrong...Talk about frustrating.....They treat her like crap...like she is some kind of a pain pill nut but hey I have been married to her for just shy of 30 years and let me tell you there IS something wrong...Just a few years ago she was working as a nurse in a local DR's office and our lives were GREAT....Now she can barely function and is in bed as I write this at about noon--which is an everyday occourance....She is fast losing her will to go on and I am scared and frustrated that no one seems to know what to do for her.....We had such a great marriage, but now this thing has devastated our lives.....I know I am not real understanding in alot of this but dang when the doctors run tests and can't find anything but I can actually see the changes in her body and swelling of joints what are we supposed to do. Sex used to be great--but now is only a memory...It's not her fault or mine (I Hope
My heart goes out to you and Gizzy. Everyone with this disease knows the ups and downs and when doctors act like their head is in their butt it makes it worse.
How many different docs have you tried?I am on my third one but still don't know if I am comfortable with him yet as I have only been to him twice. My hubby always goes with me and during Q&A if he doesn't like what they are saying or suggests something new or if he does that annoying hmmm with a head shake Mike gets right in their face and tells them "that's not an answer and if they can't find the answer and help me he'll find someoen else who will and someone who cares".
Is Gizzy in bed so much due to pain or depression? If it is depression is she willign to have counseling? The place I used to work had counselors who went to homes of people who couldn't come into the office regardless of the reason. Maybe that wouldhelp her some, even if it was just someone impartial to cry to and talk to.
Tell the docs that "I don't know what to do for you" is not an option, get in their face if necessary and don't ever give up on getting her help.
You are both in my thoughts and I will be praying for you.
Keep us posted please. I am new to the boards but have read a lot of Gizzy's posts and feel she is a friend to all of us.
Oh Larry, thank goodness that Gizzy has you. You need to go on the warpath for her. If she isn't getting treatment that works, please go somewhere else. She doesn't have the energy or the will to do it for herself. Get an appointment with another RD if necessary and demand that they do something. I have had some really awful, lazy doctors. It takes a lot of effort to find someone willing to take the time to do something for you if you are not a "textbook" case. I don't have an official diagnosis yet either, and I hope my Joe would fight for me if I gave up. Good Luck to you, and please keep us informed about Gizzy.Deena's suggestion that you go with her is very powerful. I go with my daughter to her appointments and the doctor's just railroad her. When you get really sick, it is easy for them to do.
Call, get her into the doctor office, today. Don't take no for answer. Gizzy has been on here a lot and I am sad to hear she is doing so poorly. You tell them it is their job to figure out and that is what you expect them to do.
If you don't get a satisfactory response, get her to a new RD. But if you have to take that route, explain the urgency and that you need to see a doc right away and what has happened or not happened at the previous doctor's. Otherwise, you can get stuck in their new patient wait and you don't want that.
The other thing to do seems drastic, but it does tend to get their attention. Take her to the ER. When you get in there, see if you can get her admitted and the Rheumatologist on call involved. If she is feeling that bad, they will tend to check her heart, her lungs, do blood work. Don't let them just send you home with a see your doctor within a week.
Hopefully, her doctor will see her right away. If not, tell them you are prepared to take her to the ER and that there had not be anything serious wrong with her. If so, you just may have to call your lawyer or the medical review board.
Surely you won't have to go to those extremes. But there are times when we are too sick to fight for ourselves.
Go slay some dragons and be her hero!
Larry,
I noticed that you are from SC. So am I. I go to the MUSC Bone and Joint Clinic and see Dr. Brown. Great guy! They have kind of a turnkey operation there. You need to see a rheumatologist (Dr. Brown), he's there in the building. Need to see an orthopedic surgeon, they're right there. No need to make yet another appointment and wait two weeks to be seen by this doctor, who probably doesn't have the file...yada, yada, yada...blah, blah, blah.
So, if you live close to Charleston, make an appointment. I promise they'll work until your wife is better.
Joe
Larry, It's so obvious that you adore your wife and would go to any lengths to help her. My precious husband is the same way. He helped me keep fighting and searching for answers, even when it seemed just too hard.
I agree with Beadturtle and Deena. I really think you need to find another rheumatologist. Have they done a CCP Antibody test yet? Apparently, even when the other tests are inconclusive, this one can show the presence of RA. I have also read here about sero-negative RA, which I never knew about before this forum.
It's also possible for her to have Fibromyalgia or Osteoarthritis or any of the many forms of Arthritis. She could even have a combination of several of them. It's even possible it could be something else entirely! But absolutely do not let the doctors just give up or treat her badly.
She probably should also be treated for depression. Usually counselling and/or an anti-depressant can really make a big difference.
My thoughts and prayers are with you both. Gentle hugs and Blessings,
Nini
God bless, my prayers are with you.
Have you been to a neurologist? Many pain problems can occur with something in the brain triggering the response and making you hurt when the actual spot has nothing wrong with it. I have seen this happen quite often.
Other problems could be allergies as well. I have seen horrible allergies cause this type of pain and take over.
god bless.
Larry if only all of us had someone in our corner like you! The rest are correct, if you don't like the answers, demand to see a new Dr. My GP is an HMO protocal idiot. I went over her head and got an appt with the RD, and even though he can't start me on meds yet because of upcoming surgery, he was wonderful! But, I HAD TO FIGHT to see him!! I'm alone with two teenagers, and knowing something is wrong with me, when I had to literally crawl out of bed in the morning was the last straw. I do suffer from depression and could sleep all day and night if I allowed myself to. The anti-depressant meds help a lot as does finding the right dr to treat you! Even if you have to drive a bit to see one, find Gizzy a good one!!Larry, Your wife is so lucky to have you in her corner. My husband and I have been married for 35 years and even though he is seven years older than me, I am the one who is debilitated with RA and other autoimmune disorders. I know what you're going through. The diagnosis is so tricky and you can have more than one autoimmune disease at the same time. You need to find a doctor who is honest and willing to let you know when he doesn't know and willing to refer you on. It took over 8 years for me to get diagnosed with RA along with fibromyalgia, OA, Sjogren's syndrome and probable irritable bowel syndrome. I've had repeated bouts of skin cancer and am currently recovering from shingles which happens more frequently in immune suppressed people. My primary care physician admitted to me today that he doesn't know how to deal with me and after consulting wiith my RD they conclude that I might have mixed connective disease. My husband and I am in the same situation as you and your wife. One doctor is telling me to retire (in which case I lose my health benefits which I can't afford to do), the other wants me to continue working .Both won't do the paperwork necessary for disability retirement.
My best advice is to keep meticulous records from all of your doctors and take them with you any time you see a new specialist. Do research yourself so you can help with the diagnosis. Your wife may not be able to do this herself right now. There are some good references out there like Living With Rheumatoid Arthritis a John Hopkins Press Health Book and the Arthritis Foundation's Good Living with Rheumatoid Arthritis. I also like Living Well with Autoimmune Disease by Mary J. Shomon.
There are usually support groups at hospitals where you can talk with others about the problems associated with RA and other chronic diseases. It's a good place to vent and get some xounseling. Many ot the people attending have not been officially diagnosed.
Wow!! Didn't expect all these responses--I was just venting a little..Must be a cool board...I will answer some of your questions and a heartfelt thanks for the responses...As far as the Dr's--we have gone to so many it is incredible...The run around is all we get..It seems the only one who really thinks something may be wrong is our primary care Dr. who knows little about the problem..Only thing he does is give her pain pills which are VERY addictive and IMO only make matters worse... We have been to several Rhu Dr's and are now back to the one we started with, who still will not give her a confirmed diagonisis..
Depression---I think that is most likely alot of it. (Her sleeping alot). I really like the suggestion about finding a support group..Hadn't really thought of that...She did have a pretty good day yesterday--Took her to the pool at our daughters house and was very relaxing for her..I have thought of enrolling us both in those water exercise classes...Does anyone know if those would help..I would think they would.
I also like the comment about checking her into the hospital.. I have actually thought about that...I am definately going to keep that one in my back pocket..
As far as MUSC--We have made the 6 hr round trip at least 4 or 5 times to MUSC...The first trip they did blood test and they came back Positive for RA...Then the next blood test was inconclusive and from that point forward all we got were interns who had absolutely no clue..We had a DR Smith who wouldn't even bother to come in the room..He was very good when things looked Positive then after second blood test was inc. he NEVER came in the room again. Always sent in his interns and Janie would have to go though the whole story each time from day one....Very disgusting IMO..It is pretty frustrating to drive 3 hours to have a clueless intern be the only one to see you...So after that experience MUSC is OUT!! So we figure Heck we can get an intern here in greenville so we quit going down there and went back to her original Rhe Dr.. Who has been better of late but is the most arrogant person I have ever seen..We have just run though all the blood tests again for the umpteenth time and are waiting for results again..Meanwhile the days are getting longer for her and more frustrating as the days go by....
One would have to know Janie to realize what all this has done to her....She quit HS (To Marry Me!!OUCH), but in her 30's had the intestinal fortitude to go back to school and get her GED--Then went on to get her degree as a Certified Medical asst...The whole process took like 3 yrs. and she done this while we were taking care of her dying parents....After graduation (Boy was I proud) she worked in several different Dr's offices' and her life was great...I had never seen her so vibrant and full of life...Then all this started---She just couldn't function enough to work anymore...Luckily, I have been with the same company for nearly 20 yrs and have Great insurance so we weren't hurt to bad there...Although I do have to say this whole process has been a huge financial drain on us.....Now we go day by day and hope someone can make a difference for her....We have 4 Grown children with 5 grandkids.. Our grandkids are the light of our lives and I really honestly believe They are what keeps her going....Keep us in your thoughts, and again Thank you all Soooo much for responding...At least there are others who are experiencing the same things and can relate....This site was on our favorites and I just happened to look through it yesterday...She will most likely be pretty surprised that I sent a message to this forum but I'll have her read the posts today--Maybe it'll cheer her up a little..
Thanks to all, Larry
Larry and Gizzy, you have gotten a lot of good advice here and I will just add one more thing that alot of people here do...look up info on RA and other forms of arthritis, print the info and take it with you to your next doctors visit. There are many articles about sero-negative RA, etc. Why do some doctors feel they need a definitive diagnosis? All of these diseases have pretty much the same treatment. The more informed you are the less likely you are to be pushed around by the doctor. Also maybe you could find out about the doc. mentioned by Jrf5460/Joe. Maybe things are different now at that place in charleston. Also, since your PMD seems to be in your corner, maybe you could go back and discuss other options there. It is time to really stand up and fight, be smart but raise a little hell.
I get so upset about the treatment that people go through. We are like a little family here and I take it personally every time I hear a story like this. I am a nurse and one of the first things I learned about in school is how the role of the nurse is to provide holistic care. One facet of that is the role of patient advocate. That really stuck with me, and I wish I lived close to some of you guys so I could come and advocate for you. Sometimes we all need an extra voice.
Larry I think that is going to have to be your mission...you are already on your way; Janie is lucky to have you.
Gizzy-dont you give up, get mad girl and get the care you deserve.
Crunchy is so right.
Another thought, since you have to travel so far to even see a doctor is to do some research to find someone you really want to try. Ask for patient referrals. Then, write a letter explaining that you really need to see a doctor.
Although, it sounds like she needs to be seen immediately.
Write down all the is going on and all that has been done so far for her. Tests, blood work, xrays, etc. Then, have a full list of her medications including allergies and bad reactions.
You are going have to push for her. I think it is wonderful that you care so much that you would come on here and ask questions.
Regarding the pain medications, getting addicted can happen pretty easy. But I talked to a rehab center regarding my daughter and her pain meds. They wouldn't even take her until the pain was resolved. They said that rehab doesn't work well when you really have serious pain involved.
It just sounds like they are throwing pain meds at her and not treating her properly. If they treat RA, the pain levels can go down considerably. Her function can improve and you can have the woman you love back in your arms without, "ouch!"
I wish the best for both of you.