I had my appt with the pain dr yesterday. It didn't go at all like I had hoped. After an hour long conversation and a 10 minute physical exam, she said there isn't anything she can do for me. She did increase my oxycodone from 20mg to 40 mg twice a day but it took a lot of convincing on her part.
She said she talked to my rheumy and they think its a very persistent form of poly rheumatic (sp??) and severe fibro on top of all the other things, like the adrenal issues, hormonal imbalances, neuropathy, muscle constrictors, blah, blah, blah.
She said a lot of my swelling in my back is from the steroids, the dreaded buffalo hump. She also said that my entire body is inflamed and that if all the inflammation would go away that I would probably be at least 20 lbs lighter. The range of motion in my neck is less than 1/3, I can not stand straight because my chest is so inflamed, I can not close my hands all the way, so on and so on.
She basically said that other than very high doses of steroids, there isn't anything else to be done other than to make me as comfortable as possible. She pushed again for me to get disability. She also wants me to get a wheelchair/scooter. I am not ready for the wheelchair. I am afraid I would lose any function I have left and besides, my house is very old and there is no way I could even get a wheelchair through my house.
She did tell me to double my lexapro from 10mg to 20mg. She also gave me a script for an antiperspirant to help with my sweating. She also said that she wonders if my sympathetic nervous system is still out of whack from the RSD (reflex sympathetic dystrophy) I had a few years ago. Since my blood pressure is already borderline high from the steroids, she also gave me a patch, its called catapres. Its supposed to help lower my blood pressure and might help my sympathetic nervous system as well and is somehow supposed to help with pain also. I have never heard of it before and plan to do some googling later about it.
I woke up just in tears this am. I can not imagine the rest of my life being like this, its really just too much for me to bear. She did give me the number of yet another shrink but of course, not accepting new patients, so still looking for a new shrink.
I am still waiting for the U of M to call me back with an appt but I know IF I get an appt, it will be several months away. I just can not believe the doctors are telling me to live like this. I feel all hope is lost, the carpet has been pulled out under my feet, the final door closed. Here, spend the rest of your life jacked up on pain pills that don't take the pain away and deal with it. My poor husband doesn't know what to do or think. I couldn't stop crying this morning and he just went to the basement to hide. Now, here I sit at work, by myself, trying to come to terms with something that I just can't really come to terms with at all.
Michele, I wish there was something profound I could say besides I'm sorry that would help you. I don't know what you are going through because I don't have RA. My only experience with this is watching my two sisters suffer with it. My sis with RA is in so much pain 99% of the time it is visable to all of us and heart breaking. My sis with OA is pretty much controlled since she went on disability. My small bouts with gout,bursitis and tendonitis, though very painful, doesn't last very long.Chronic, continual pain, has to depressing so please take your meds as Dr. prescribed. And please keep trying to find the right theropist to help you deal with all the other issues you are facing.
I really am hurting for you and praying for relief for you as I'm sure everyone here is. Please know that people care about you and are here for you. Take Care and God Bless You...
Micheleb,
Are you talking about this?
Polymyalgia rheumatica causes muscle pain and stiffness in your neck, shoulders and hips. It is most common in women and almost always occurs in people over 50. The main symptom of polymyalgia rheumatica is stiffness after resting. Other symptoms include fever, weakness and weight loss. In some cases, polymyalgia rheumatica develops overnight. In others, it is gradual.
Polymyalgia rheumatica sometimes occurs along with giant cell arteritis, a condition that causes swelling of the arteries in your head. Symptoms include headaches and blurred vision. Doctors often prescribe a medicine called prednisone for both conditions. With treatment, polymyalgia rheumatica usually disappears in a day or two. Without treatment, it usually goes away after a year or more. Untreated, giant cell arteritis carries a small risk of blindness or stroke.
I know it seems like it is over said and taken for granted but just "hang in there" and it will eventually be figured out and controlled. This is just a moment in time and will just be a memory when it is figured out and controlled. Maybe i missed something in your post or you missed posting something. No one can feel your pain but even your pain will pass. I am going to re-read your post and see if i missed something. Be a brave soldier, hang in there.
LEV
Michele,
I am sitting here crying for you. I know it's so easy for me to say to hang in there, one day, one hour , one minute at a time. And if I could Michele, I would be there in person to hug you, I would. I love you, WE love you. YOU have worth. There is a purpose for your life Michele. I'm so sorry that this is happening to you. Just know that we're here for you, everyday.
Yes, I believe that is what she called it. Over memorial day weekend, my neck started hurting REALLY bad, enough to go to urgent care. This was a new hurt for me if you will.Hi Michele, you have been so thoughtful and supportive during my stressful, painful times and I thank you, even though you aren't feeling well you give so much love and kindness to others!
I think you are right about refusing 'the wheelchair, scooter' idea but would it help you get out with your husband? Could you two go shopping, visit friends, to the park? I don't know how you feel when you are 'out', but maybe?
You are right to be fearful of more Oxycotin, but maybe if you follow some of her advice , say for a month, you will feel better and be able to do some of the things you like to do? Having it all under one doctor's care then branching out from there seems sensible to me....too many doctors can be counter productive.
I'm thinking of you and feeling for you and your husband for having to struggle with this. I 'm hoping you will do better soon, Please keep writing to us as you know we care, don't judge one another, and are supportive. (even make a few suggestions....hope you don't mind.) Love,me
Oh Michele I am really sorry its all going so wrong and I wish I could say or do something to help. Coming to terms with just the medical problems doesnt happen over night and 10 years along the line I still think I am going to get better and deny to myself how bad things have got. I quite often say that I am alive but not living, well not as a 43year old should. I had a miscarrage and it is soul destroying but i was lucky enough to have 3 children, my heart breaks for you . I am surprised at not being able to adopt though as I was watching an American program that we get here called ADOPTION STORIES, the lady had MS and her adoption went through ok. I think a phsychatrist will be of great help, its just a pity that you cant get an appointment.Can Will go with you when you do get an appointment, I know he doesnt go to your Drs appointments but it might be beneficial with this one.You really do need him to be more supportive, I think his denial in all of this is making you more ill.Oh Sweetie I wish there was something I could doMiles2go, that has been my motto since I lost the twins 1.5 years ago, one day at a time. I hate to sound so whiny but I feel like tomorrow never comes. I feel like I keep trying, keep looking for positives and keep being shot down, than kicked while I am down sort to speak. I am just tired of being sick and tired, I feel completely wore out, let down, deflated. I feel the bruise on my forehead from beating my head against the wall will never go away. The scooter thing is a huge step but I found it harder to have the wheelchair.Its pride and also the feeling of giving in. I sometimes think with mobility products we think that if we use them we are going to rely on them and its a step to getting worse. My first time out on my scooter was a trip to a friends house who only lived about 200 yards away.I went on my own which was a first mistake as i couldnt co-ordinate the curbs. Michele you can get models that are lightweight and easy to fold upThanks for sharing your story pincushion. You are right, I feel like I am giving in. It would be nice to go for "walks" around the neighborhood, just to get some fresh air. I guess I should at least check out the different models available and see what my insurance will pay towards one. I just can't even believe I am thinking about this at age 36. I feel ashamed of myself, I feel fat (I am fat at 196 pounds, 5'8) I feel stinky because I sweat all the time, but this new antiperspirant stuff does seem to be helping already. I put it under my arms last night, under my boobs (what boobs I have I have to turn my whole body to look from the keyboard to the computer screen. I can I still hurt with so much narcotic in my sytsem???? Michelle, I am so sorry for your awful doctor appointment. I cant even imagine how you feel. We are all wishing this to go away for you.Hang in there.
What's the word on the wedding. I think if I was doing as poorly as you sound my husband and I both would probable be staying home. When is the wedding?
dear Michele, I'm so sorry you must deal with this stuff at such a young age, but I know yu will do better than some people. So many supportive, sweet people here to write your thoughts to. What a treat to have this board! If you could get a bit more mobile with a scooter perhaps friends , like the woman 200 yards away, would lift your spirits and you could start moving around a little bit more. You aren't considered a whiner here, but a real sweet friend, love meMichele please keep in mind that the pain dr opinion is just an opinion of 1 person. Pain docs can get a few people out of their pain but mostly they treat people with chronic conditions who will not only not get well but will usually grow worse (bad backs, neck pain, various forms of nerve disease,etc) .
I would love to see you go to Mayo clinic, or some university clinic who Dx and work up treatment plans for the bizarre cases. I think you just have not gotten to the right docs yet. So find that shrink or better yet a counselor to help you deal (most shrinks only write scripts these days, they don't do any counseling).
I picture you rocking a baby in the future, happy and coping well.
Love M
((((hugs)))) I wish I had something more to say than I am sorry that you are not finding any relief anywhere with anyone. It just breaks my heart to watch you go thru this.
I like Marians line of thinking of finding a counselor or psychologist. Most psychiatrists now a days just prescribe meds and have you work with a psychologist for the therapy part.
((((((((((((Michele)))))))))))))Thanks everyone for you kind words. I do plan on finding a shrink, nope, don't want anymore meds, am on enough!btw -You do not deserve this! Sometimes life is just plain crappy and we don't know why! Hang in there, you are in my prayers.
Laker
I'm not on here enough to really "Know" everyone- but I just wanted to tell you I'm so sorry for all you're going through!! And if it's ok, I'll be praying for you...you didn't do anything to deserve this sweety!! ((((hugs))))
I resisted using a scooter or wheelchair for a long time too. I was embarressed to be in it while I was still working. But after I went on SSDI, the scooter, and then, especially, the motorized wheelchar opened a new world for me.
Before that I had to think about going anywhere in terms of how many steps there were since every step was painful and I had only so many steps in me before I pooped out. Now shopping has become a really fun activity for me and I'm up to going anywhere for fun!
You'd be amazed at how much you can do!!
Kathy
So sorry to hear about the not so encouraging news. Does it have to a psychiatrist that you see? I was at the end of my rope last year and stumbled upon woman who is an ARNP and an MSW. I see her for counseling (depression and such) and medication (other than my RA meds). She is fantastic, down to earth and we meet in her cozy little office, with antique furniture and tea.