In need of advice!!

Been awhile since I've posted on here but thought it was time that I ask for some advice.

In April 2010 I had surgery on my Right knee. After that I have been in awful pain from head to toe. I saw a rhuemo doctor who diagnosed me with fibro. She and I had an argument regarding treatment because she wasn't going to do anything. She eventually agreed to put me on Lyrica 75mg a day. Which of course was useless. I eventually was able to get into see another rhuemo doctor in July 2010. He did some further testing and agreed that I do have fibro. He put me on wellbutrin 75mg and ativan to start. He also ordered to have a sleep study done because my average sleep a night was 1 hour. I tried the wellbutrin and ativan which didn't have much effect on my depression or anxiety or pain. I had another surgery on my right knee to do a partial knee replacement. I continued to have extreme knee pain and was falling alot. I returned to see the rhuemo doctor in November who put me on effexor and doxepin at night and the wellbutrin in the morning. Still didn't find any relief from the pain or any changes in my sleep. Alot of times I would go 3 days without any sleep and then crash for 3 hours. My family doctor doesn't believe in fibro and has told me over and over again that I was just giving up on life at the age of 39 and that I was to young for this. At the end of November I had surgery on my left knee for a tear. In December I went back to the rhuemo doctor who reordered the sleep study because I never went to the first one because I felt like they couldn't do a study on someone that didn't sleep. I scheduled for my sleep study this time. I had to goto the family doctor because of extreme pain I was experiencing at the time and needed some relief. He proceeded to stop my wellbutrin, effexor, and doxepin and ordered cymbalata 60mg a day. Also told me to see a psychiatrist and have a sleep study done. I told him I had tried multiple times to see a psychiatrist because of my depression, anxiety, and wanting to end my life because of the pain and not being able to do what I use to do. He told me to try again to schedule the appt. I had my sleep study at the end of December 2010. In January 2011 they told me I had severe sleep apnea when laying on my back and moderate sleep apnea when sleeping on my side. I was put on cpap at that time and setup appts to speak with a sleep specialist in the nuero dept. I still was unable to schedule an appt with a psychiatrist so I just continued to deal with my problems. The sleep doctor put me on ambien 10mg every night which helped some. I was able to get 3 to 4 hours of sleep now. In March I received a letter stating that my rhuemo doctor had retired and that I needed to find someone else to continue my care. Great! I also followed up with my family doctor in March 2011 who asked me if I got a psych appt yet. I said no and explained what had been happening. He told me that his staff would schedule an appt for me since I was having so much trouble. They ended up getting me an appt in May 2011. It was the soonest I could get in. May came and I saw the psych doctor who said I needed to see an actual Psychiatrist to deal with medication to help treat my problems. I have done that and now am on risperdone 1mg nightly.

I am trying to find another doctor to treat my fibro in the rhuemotology dept or pain management dept. So any suggestions would be greatly appreciated. I have tried doctor kenneth grimm at the cleveland clinic who says he can't do anything and that I need to goto a chronic pain rehab program that the cleveland clinic has. I can't afford to pay $35 a day to go, I don't have anyone to take my daughter to school and pick her up daily, and my wife can't take every friday off to be with me at this program or she will loose her job. I have applied for disability and have been turned down 2 times. I am now at the hearing stage and waiting for a date. I have only been able to get my psych doctor to fill out the mental health papers for the disability case. No one else will fill out the physical assessment papers for me. I am really at my wits end with all this. Any support would be greatly appreciated and I am sorry for such a long winded post.

Have you tried contacting your local hospital? You should be able to go online to the hospital website or call and ask for the physician referral service. See if they can match you up with a rheumotologist and/or a pain specialist with an interest in Fibromyalgia. Failing that, go to the National Fibromyalgia Association website. You can find a list of fibro-friendly healthcare providers listed for your state there.

Does the Celevalnd Clinic offer any kind of financial assistance for patients that can not afford the care that they need? Have you spoken to a patient advocate at the clinic to see what might be possible? Your wife may be able to use the Family Leave Medical Act to (FMLA) in order to be at the clinic while you undergo care and not lose her job. Google that too. Surely, there must be a neighbor, a family friend or someone from church who could help with your daughter.

As for disability, I assume you are using a lawyer which can take years. I'd recommend that you consider using a company called Allsup. They had me approved in 6 months which is their normal operating procedure. You can find them online by using Google. Allsup has a 98% success rate and they do everything for you. They don't take more than a lawyer and nothing if they don't win. They'll help you appeal too. They were nothing but nice to me and made the whole process pretty easy. You'll have to go for a short physical and mental health exam towards the end of the process and that is it. There will be no disinterested judge who has no concept of living with chronic pain.

And finally, I'd like to gently say that by not following up on the things your doctor wants you to do in a timely manner like the sleep study, and seeing a shrink only makes getting your disability case settled much more difficult. The Social Security Administration wants to see consistent evidence of all of the medical issues that you claim to have as well as evidence of ongoing care.

I think that there are some viable options to explore. Good luck to you and I hope that one or more of my suggestions will work out for you. Take care.

crhennes,

From your post, it sounds like you are desperate to resolve this, and quickly. I think you deserve better care than you are getting now, and I think you can probably feel much better, but the issues you are talking about unfortunately can take a while to sort out. So as you go through this, you'll need to be patient and realize there are often waits for specialists.

It sounds to me like you have three related medical issues going on:
1. Sleep issues/sleep apnea
2. Fibromyalgia/chronic pain
3. Depression/anxiety

And you also are dealing with a PCP who is not supportive, an unhelpful pain management doc you saw at Cleavland Clinic, and not having a rheumatologist.

Now, let's brainstorm some solutions to each of them:

1. Sleep issues/sleep apnea - I'm biased because I also have sleep apnea, but I think sleep issues are the most important to deal with of all your issues. Have you been able to use the CPAP successfully? If not, call your CPAP supplier and talk to them about any problems you have been having. They're really good at troubleshooting. Have you seen the sleep specialist yet? Any chance of making another appointment with them? Hopefully they can get you sleeping better. When I was diagnosed with apnea I had intractable depression and thought it would probably kill me. After a few months on CPAP, the depression lifted and I felt life was worth living for the first time in a few years.

2. Fibromyalgia/chronic pain - You have a suggestion from the pain management doc to attend a chronic pain clinic, but you feel like right now, you can afford it and your wife can't get the time off. I think the chronic pain clinic is probably a good option, but if you can't make it work out, you can't. It sounds like you need a few things here. First, a PCP who is knowledgeable about FM and will help you. Second, a way to begin to manage your pain without going to a pain management clinic. One of the things to know about FM is that there is no "magic bullet". Meds can help with pain management, but a lot of the pain management techniques are behavioral. Here is a website with PDFs of different self management techniques that can be used to help with fibromyalgia.
http://www.med.umich.edu/painresearch/pro/self.htm

3. Depression/Anxiety - It sounds like it can be hard to find good mental health professionals in your area. Do you have a follow up with the psychiatrist? I would have the psychiatrist manage your depression/anxiety meds, and have them work with whoever is prescribing fibromyalgia meds. There is a lot of overlap between the two meds. The other very effective treatment for depression and anxiety is Cognitive Behavioral Therapy (CBT). CBT is also used for chronic pain, so you might be able to find a therapist who does both. Ask the psychiatrist for a referral.

Finally, the problem with your PCP and not having a rheumatologist. I think the most important thing is you have one doctor overseeing and managing your care. Ideally that doctor would be your PCP, and so I think it is worth trying to find a new one. I'd ask your insurance company for a list and just start making calls, asking if the doctor works with patients with fibromyalgia and chronic pain. When you find a doc that sounds receptive over the phone, make an appointment and go talk to him or her. Tell them your issues - sleep, fibromyalgia, and depression/anxiety - and about the other docs you are working with, and ask if they would be comfortable coordinating your care and managing your fibromyalgia. It is hard when you first see a new PCP to rehash all your medical history and issues, but if you find someone you are comfortable with, it will be worth it.

You might be able to find a specialist who can help with more than one of your medical issues. For example, this nurse practitioner is in the psychiatry department, but also manages fibromyalgia and chronic pain:
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?Doctorid=5694

I'm not affiliated with Cleveland Clinic, I just used their staff directory. You also can find rhumatologists and pain management doctors who list fibromyalgia as one of the conditions they treat on the Cleveland Clinic website.

I know when you are in the middle of things, it is easy to feel like everything must get resolved now. But I would suggest taking it one thing at a time. I would try to get the sleep under control, then try and find effective meds for the depression/anxiety, and then deal with the fibromyalgia. Or if you feel the pain is a bigger issue, switch the order. Trying to do it all at once is overwhelming and will probably spread you too thin.

I wish you luck in sorting this stuff out. It is really difficult when you feel like no one is listening to you.