Monday, May 28, 2012

Comorbid conditions, medications and me

By SusieB Tuesday, May 18, 2010

I have migraine disease and fibromyalgia, along with interstitial cystitis. I went to the neurologist for a follow-up on the first two Thursday. I had the appointment for 3 p.m., but I always need to call ahead because he's often running behind. I was told to come at 4 p.m. My husband took me to the appointment and we sat through all of "Ellen" in the waiting room. We got back to a room around 5:15-5:20 p.m. and didn't see the doctor until 6 p.m. By then, the doctor seemed sluggish, his eyes were closing while we talked, and my husband noticed there were long pauses in our exchange that drove him nuts.

 

The take-aways that made me upset the next day were that he told me I was a high-strung individual, wound tightly and needed to get rid of stress. How he got that is beyond me because I don't see him that often (maybe 4 to 6 months apart). I am medically retired from work and told him I am in bed most of the day because of the pain, nausea and exhaustion. My husband misunderstood the words "high-strung" and "wound tightly" to mean: worry wart. I did admit I come from a long line of worriers. Who wouldn't worry when you're 39 and you had to medically retire at 38 because you have uncontrolled headaches, migraine and this stinkin' illness known as fibromyalgia?

 

That was the first part though. My student loan carrier wanted me to have the doctor fill out paperwork to discharge my loan. They won't accept that I receive an annuity from the government medically retiring me. They see that like social security, not an income. The paperwork for it has a statement the doctor signs, saying I am unable to work and earn money in any capacity, any field because of injury or illness that is expected to continue indefinitely or result in death. The doctor won't sign it because I could get better down the road and work again, and that statement and the next which says I have a total and permanent disability would be wrong. He said with "if-y" illnesses like mine it's too difficult to say for sure I will have them permanently. "If-y" illnesses.

 

I walked away with the feeling that my stress and high-strung personality, if I even have one, are causing the symptoms. At the same time, during that same visit, all the symptoms I told him were fibromyalgia. One could deduce that the doctor thinks it's a "nervous illness," and yet he gave me a booklet about it that says it's "not in your head." Complete polar opposites.

 

That said I was given a medication, Savella, for the fibromyalgia that could interact with Relpax and cause serotonin syndrome, a major side effect. I can try it and see if I get this syndrome the next time I get a migraine, or since it's not going to work to prevent the blasted headaches or migraines anyway, not take it. I opt for the latter, and I really need to bite the bullet and take myself to the Cleveland Clinic to see a doctor who specializes in migraine treatment, fibromyalgia and women's health issues that I found while searching their headache clinic.

IMATCH treatment program
5/18/10 5:32pm

OMG Are you kidding me? I think you have  found the only dr possibly worse than mine. You need a new doctor. Fortunate on June 15 i have an appointment with a new doctor. How in the world. and In what world can u use High strung with fibromyalgia? I do not have it myself, but I know enough about it to know they can not go together.

5/19/10 1:46am

I know! I'm so tired all the time that I can't see myself as high-strung. Maybe when I had energy and worked fulltime, I can see that I might have been that way during stressful days, but really, not much going on now. Thanks for making me smile though b/c, yeah, that comment really bothered me the most. I AM forgetful though, so maybe I forgot I was high-strung? :)

 

I sure hope you have a great appointment with your new doctor. Yes, I, too, need a new one, one who will be fully present when I have an appointment and not so insulting, for Pete's sake!

Nancy Harris Bonk, Health Guide
5/19/10 9:42pm

Hey there,

 

I know you already know what I am going to say. Fire his sorry butt and find a "true" Migraine specialist who will acutally be a partner in your health care, not a by stander!! Cleveland clinic, or wherever, just make sure it is a Migraine specialist, not a neurologist who calls themselves a Migraine specialist. Your doctor clearly isn't helping you, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

 

We have another site here that has information about Fibro on it you can take a look at HERE.

 

You may want to take a look at this new study: Study: Combining Lyrica and Savella Could Significantly Reduce Fibromyalgia Pain

 

Good luck

Nancy

5/20/10 9:54am

First off, find another doctor!!!!!! It seems he has too many patients - no one should have to wait that long.  Certain docs can make you feel like they are doing you a favor.  There are a lot of doctors out there - pick another and keep going until you find one that treats you decently.  Also re disability - it sounds like he doesn't want to be bothered - he should be trying to help you not hinder you.  Good luck

5/20/10 11:25am

Everyone else is saying it all.  There are still to many medical professionals who do not believe fibro is a real disorder.  It seems this guy is one of them.  Unless he's a neurosurgeon delivering babies unexpectedly, there is no excuse for seeing a patient 3 hours after the scheduled appointment.  Granted there is a valid point that things could possibly improve/resolve in the future, but then you deal with it at that time.  Sometimes it's really crap having two invisible disorders/diseases.  Again, get rid of the jerk.

5/20/10 12:29pm

Everyone else has already said it (to find a headache specialist), so all I need to do is agree and say you would probably get better treatment at Sears, at least Customer Service-wise.

 

I would like to add that I am in the same boat with you in the Student Loan issue. I have the same medical problems, migraines and fibromyalgia, and of course no doctor wants to sign anything to the effect that either is permanently disabling. I think my next step will be an attorney, possibly from a legal aid or sliding fee scale -type, so at least I can get them off my back as long as I am disabled.

 

Best of luck to you, and don't wait too long to find a new doctor---you could start feeling better sooner!

5/20/10 1:22pm

Hi SusieB.  Interesting, I'm a SusieB too - Susan Barbara.  I also have a darling fluffy dog - mine's a mini Schnauzer.  I certainly empathize with your migraines and frustrations.  I too had a neurologist who kept me waiting as long as three hours.  I have fibromyalgia and migraines as well, and panic / anxiety disorder to top it off.  I always felt like I had been run over by a truck, constantly in pain.  I go to a psychiatrist for the panic and he prescribed Cymbalta.  Almost immediately my constant pain went away.  If I forget to take the Cymbalta for a couple days, the pain returns so I know it's the Cymbalta that keeps me virtually pain free.  Please don't take this as an insult - but would you consider a psychiatrist?  I ended up going to one because nothing else worked. 

 

I've done a couple other things that made a huge difference - I got an ergonomic pillow.  I sleep on my side and it supports my neck.  I noticed a big difference right away.  And I go to a chiropractor who does an atlas adjustment. 

 

Whatever you try, I hope you dump your current doc, find one that is effective, and get past your pain.  I've been there. 

 

Best wishes!!

 

 

7/12/10 12:02am

SusanB, we're so much alike; I, too, have an anxiety disorder. I thankfully was treated through psychotherapy when the medications (Zoloft, Lexapro, Ativan and something else) made me feel so ill and so depressed I had to come off them. I was seeing a neuro-psychiatrist, but sadly what he wanted for me -- to see a nutritionist first -- my insurance company would not cover unless I am diabetic. I can't afford much out of pocket since my husband's flexible spending plan is to cover my medications. Now, the doctor sent a letter saying he's had to leave his practice because of family health issues and the decrease in insurance reimbursement that hurt his small practice.

 

Good news though. Dr. Mark Stillman at the Cleveland Clinic's Neurological Center for Pain will see me August 19 so please pray and think of me. He treats migraine, fibromyalgia and studies "women's health issues." My physical therapist did say that my case is just the sort of challenge for the Cleveland Clinic. :)

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By SusieB— Last Modified: 10/06/11, First Published: 05/18/10