Wife praying for a miracle
ShmorgCT - Jul 28th, 2009 9:40 PM
[ Original Post ]

My husband has been fighting fibro since 1999 and his care has been anything but good. I am wondering when physicians will start refering to fibro as a real disease. Due to the many meds my husband is on and his continuos pain he has started to withdraw from life. He has already withdrawed from his friends, work and family. His focus for the past 5 years has been on his pain medication. Well due to his missing appointments his doctor has cut him off of his medication and told him to seek the care of another doctor. He cut him off of his medication completely and today is his first day of Oxycodone withdrawal. His depression is severe and I am concerned. I spoke to the doctor's nurse and wondered where my instruction are. What is normal withdrawal and what is not and she was extremely smug and spoke to me like I was an idiot. We went to pain Management and that dr was unbelievable. I could not believe a dr could be so rude and judgemental. He refered to fibro as so-called and told my husband that he needed goals. Getting up to play with his two boys was not enough. How could a pain specialist not understand the sheer goal of getting out of bed? He also ridiculed him for not working. I make a decent living and the choice for my husband to stay home was so that if he did have good days he could spend them with his children. The dr cut us off in mid sentence and asked him questions like "What did you eat for lunch?" my husband answered Peanut Butter and the Dr asked "What kind?" my husband answered "skippy". The whole time the Dr. was short and insulting. We have been to every kind of provider we could think of Acupuncture, Naturalist, Buddist Preists, Boston. Everywhere to get help but have hit dead ends. Dr.'s have treated us badly and as my husband has gained wait with the disease it has gotten worst. Let me have a miracle to get through this week. I am scared and I want my husband back. I miss him so much.Any advice?

Comment


 

bbass - Jul 29th, 2009 1:53 AM

Oh I am so sorry to hear about your situation! Don't give up, I am sure you guys will find a supportive doctor. I don't know if your husband has tried cymbalta? It helps with the depression and the pain. He is definitely fortunate to have such a supportive wife...I imagine it is even harder for a man to have fibro...because it's not as common.
Several people say to go to the national fibromyalgia website...maybe you can search through the entries...but they have a place that you can search for fibro friendly doctors in your area. Sorry I can't help you, but hang in there.


ShmorgCT - Jul 29th, 2009 4:07 PM

Thanks for your caring words. Today was very difficult. He wants to give up. I keep pushing him to hang in. He is on Cymbalta and I can see the difference with that medication instantly. I just need to get through these next few days with him and he will be better I keep telling myself. I am not always the best wife. It is hard carrying the load. My oldest son has autism and between that, work and home I am not sure how I get through the day. I am not always happy or nice and I miss my old husband so much I can't explain. Give me strength!


bbass - Jul 30th, 2009 12:38 AM

I can totally relate to losing your husband. About 2 years ago my husband suffered a severe nervous breakdown. he has taken so many different meds, because he has atypical or medication resistant depression, anxiety, and ocd. I pray every day for the strength and endurance to get through it. I miss my husband too! Recently he has been put on Cymbalta also and has improved some...it's hard not to get too hopeful. But to have your husband sick and your child needing so much care, my heart really goes out to you. My favorite saying is words from the Bible, "sufficent to each day is it's own badness" Or you just have to take it each day, do the best you can. I hope you are not alone, I hope you have some supportive family or friends. That is what has helped me alot, with my own illness and that of my husbands. Also, dont forget to take care of yourself. It sounds like you are running low...if you are not careful you might suffer adrenal fatigue. Try to do something that you enjoy. That relaxes you, and give the Cymbalta time to work. Hope that helps?


Fantod - Jul 31st, 2009 10:06 PM

OMG - I have read your post a couple of times and I am still incredulous. What Dr in their right mind would take a patient off of a narcotic drug and leave them to handle withdrawl on their own. That is criminal all by itself. You have every right to be concerned.

From your post, I am guessing that you live in CT and probably close to Boston. Have you called Mass General and spoken to their physician referral service to find a rheumotologist and/or a pain specialist with an interest in Fibromyalgia (FMS)? You can also go online to the National Fibromyalgia Association website and register. Then you can see a list of healthcare providers in your area. There are still plenty of doctors out there who think FMS is a figment of our collective imaginations. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control. Any doctor who does not recognise it is living in the dark ages.

Does you husband have a therapist? If not, you need to find one in your area who deals with chronic illness (google "your city, chronic illness and clinical psychologist"). If he won't go (men!) than you go and talk to someone. Your stress level is horrendous and you need support as much as he does. Maybe if you start the process, he'll agree to go for the sake of the family unit.

As for the doctors you have encountered, they should all be reported in writing for their terrible and unprofessional behavior. I would report them to the state medical board, your health insurance carrier and the hospital system that they are affiliated with. I know that this sounds like a tall order. If you are proficient on the computer you could write one letter and just cut and paste the necessary names and addresses. If they did it to you and your husband, they are certainly doing it to other people.

There is a new medicaton on the market called Savella which is for FMS. It has been used in Europe for quite sometime and was approved for use in USA earlier this year. I use Cymabalta myself and it is helpful. Unfortunately, I am extremely sensitve to medication. I can't tolerate a higher dose of Cymbalta or Savella at all. If you can find a doctor who is on the ball about FMS, they may be able to effect some positive changes. However, I think it is crucial that a clinical psychologist be part of the team too. If things really progress downhill, I'd take your husband to Emergency and have him admitted.

I hope that things are better by the time that you read this. My heart goes out to you and your family for a variety of reasons. Take care, keep in touch and let us know how we can help.



pfiinch - Aug 31st, 2009 7:08 PM

ShmorgCT,Oh my god i am new to this forum and I really would like to talk with you!! I just saw this from JUlY 28. I am going to look on the board for you this is very serious of detox from OYICOTIN it is deadly and if something happen to husband youwould be able to sue him No matter how sick your husband is never ever miss the DR.s appointment.Pain management is vey serious and they do cut you off but usually they have to give instructions and medications to wing off this stuff.I myself have detoxed from it and it was like being in a horiad movie.I am sorry but it sounds like he messsed up big time not going to his appt. There are so many people pain management that they get that way because honestly it sounds as because of his pain he missed them,but that is when the Dr.really needs to see him.