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Fantod - December 9

Hi Pam - Just checking to see if you had any better results with the rheumotologist that you saw today. Let us know whenever you feel up to it. Give your kitty a hug for me.

 

pam80 - December 9

Hi Fantod. Thanks for checking in on me. I went to a facility that has a doctor who had fibromyalgia (or is in remission). I thought that he was a rheumatologist but he is not. They also do physical therapy, have a nutritionist and will monitor my medication. They want me to come 2-3 times for week. I just had an intake today and then next week I will have an another appointment to get my "treatment plan." I guess I'll try it out and see how it goes.

My Dad went with me because my mom gives me trouble about seeing a lot of doctors. She thinks I doctor shop, but I just want the best care for my condition. The dr. said that I am in the early stages of FM so I guess that's a good thing. He stressed that I really need to change my behaviors and the way that I think about things. I have to stop being so hard on myself and believe that I can improve. So, we'll see what happens. I want to get better and feel in control of my illness. I don't want to feel like crap every single day.

 

Fantod - December 9

Hi Pam - I was glad to read that your experience yesterday was not so negative. And, the doctor did give you excellent advise about getting a better handle on your emotions.

That being said, I think that you still need to find a fibro-friendly rheumotologist. Again, go to the National Fibromyalgia Association website and look at the listings for your state. You can use Google to check them out for complaints or positive comments prior to making an appointment.

It seems with the advent of FMS being recognised treatment centers have sprung up everywhere. I am not saying that the place you went to is bogus but I am saying be very careful. There now seems to be a plethora of places who will gladly take money from FMS patients and do little or nothing to actually help them. Unfortunately, it is all about how much money they can get out of the insurance companies and less about real results.
And, it is hard to quantify results with FMS under the best of circumstances. It is a wiley syndrome that continues to change as time progresses.

Doctor shop until you are satisfied with your care. Some older folks think one doctor is as good as another. That is certainly not true when dealing with a complex syndrome like FMS. Frankly, your mother should put a sock in it. (Sorry - but it makes me mad.) I'm lucky because my mother is open to alternative treatment and is generally supportive about seeking better treatment options. Where she sometimes falls down is still thinking that I am physically capable of doing everything I did before. The mental capacity is still there but the body generally doesn't cooperate. I do better at my command post - the computer. It gives me the freedom to explore the outside world, research and problem solve and keep myself entertained. I do some volunteer work for various genealogy sites that need help entering data for WWI soldiers and things like that too. If I thought colouring books and crayons or fingerpaints would keep me engaged, I'd be the next Dali. Here is today's motto: Fall down seven times, get up eight. Take care.

 

pam80 - December 10

Hi Fantod. Thanks for the heads up about these treatment "facilities." The facility isn't just for fibro-that's just one of the things they treat. I don't know if that makes a difference though? The dr. yesterday was nice and spent a lot of time with me. The only thing I didn't like was that he said that FM almost always gets worse. That's not entirely true, right? I'm still holding onto the hope that someday I can put this in remission. I probably still will look for a rheumatologist.

Yeah-my mom needs to put a sock in it! Last tight she threw up her arms in disgust and frustration and yelled "I can't take it anymore!" Because I was crying. SHE can't take it anymore? She said I'm ruining her life and all I do is go see doctors. I'm glad that your mom is supportive, plus you have such a good attitude!

I have been very down-especially since my diagnosis. I feel like I am mourning the loss of myself and the thought of living in chronic pain scares me so much. I wish that I was a more positive person- I know that it's never too late to start. It's just the more symptoms I get, the more depressed I become. I know you guys said not to concentrate on symptoms but it's hard not too. I need to work on distracting. I just WISH that my constant headache would end. Getting headaches on a regular basis stinks, I'm sure, but I'd take that over them being constant! I know that you said getting on a proper sleep schedule will help my body pain, possibly it could help the headaches. I did buy some Curamin but I haven't noticed that it's helped. My ears also are ringing constantly-for the past 2 weeks or so. It's driving me crazy! I do have some TMJ issues but my ears never rang before. My anxiety level is unbelievably high. I can't seem to knock it down. Have you noticed?-lol.

Thanks for all of your help. I hope that you are doing OK.

Pam

P.S. I did get my kitty a hug for you :)

 

Fantod - December 10

Hi Pam - The doctor is not entirely right in his assertion that FMS almost always gets worse. There is actually no way to predict what it will do. It may remain the same, get better or get worse. As for remission, it is very rare and I would not focus on that. Rather, focus on learning to manage your symptoms so you can plateau and maintain some level of comfort.

I'm still on the fence about the clinic. Go along with the program for now to see if it does any good. In the interim, look for a rheumy.

It is normal to be in mourning after a diagnosis like this. But, you are still the same person who just has to learn to live life a little differently. Things could be much, much worse. You could have a fatal illness or be paralyzed from the neck down. Again, focusing on the negative rather than anything good is not going to help. You need to find a counselor who teaches cognitive behavioral therapy (CBT). It is based on the idea that our moods are caused largely by our interpretations of the world around us, and that these interpretations are not factual. In the world of CBT, if you want to change the way you feel, you have to change the way that you think. Defusing negative thoughts makes it less likely that they'll build to a bigger problem like depression.

Have you considered see a doctor who specilizes in headaches? I am pretty certain that your problem all stems from your TMJ and grinding at night. (Try wearing your splint during the day when you are reading or surfing the Net to give your jaw a break.) But, it would not hurt to see someone just to see if they have any other thoughts on the subject. And, stop discussing your medical care with your mother. She has made it very clear that she can't cope with any more information on your illness. Give her and yourself a break from the drama.

As for the Curamin, the longer a chronic pain cycle continues without treatment the harder it becomes to manage or stop. It may take some time for the Curamin to catch up to your pain receptors and help level them out.

I have TMJ with ringing ears (tinnitus) periodically too. It can be pretty annoying. There are homeopathic remedies like Cimicifuga available to help with this.

Thanks for asking - I'm really, really tired today. My Dad (84) has mild dementia. I spent part of the evening at my folks house so my mother could attend a function. Dad is no problem but the extra activity and driving back and forth (especially in the cold) has just wiped me out. It is almost the crack of 1 PM and I am still not showered or dressed. I'm fighting going back to sleep. Pooder (my cat) is lounging on the couch napping and I am so tempted to join her. I do have a couple of errands to run so I will focus on getting out of the house which may perk me up.

By the way, what happened to going to stay with your Grandmother for a couple of days? Still sounds like a mini vacation to me. And, grandparents are usually pretty good about doling out advice that makes good sense. I sure miss having mine. Have a good weekend.

 

kvc33 - December 10

Hi Pam I too have ringing in the ears which is known as tinnitus. Stress can bring it on or make it worse. I find that if I massage around my mouth and cheeks before going to sleep I don't clench my teeth as much. You might want to try it. With all due respect your Mom seems like a selfish person. She is more concerned about how your illness is affecting her rather than you. Was she always self-centred? I deal with the same thing and living with my Mom would be a nightmare. I still highly suggest that you get out of there.

 

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