Another Dr. , Another frustration - when will I know what's wrong?

[Scarletotter]

Sigh, all I want for Christmas is a doctor who will figure out what the heck is wrong with me!
So my rheumatologist does not treat Fibro, he "only excludes it as a possibility" None of the tests he ran came back with a clue as to what might be the cause of my fatigue, muscle pain, joint pain, brain fuzziness, cold sensitivity, foggy brain, etc.

So my PCP says, let's go see a neurologist (after doing a brain MRI, which of course, was normal) Plus, maybe he can explain why the last few months, I've been waking up in the early stages of sleep with chattering teeth.

So appointment was today, and of course, my neurological exam feels very normal. And while he admits "I don't usually treat fibro, and I'm not an expert on it" he says my symptoms don't scream fibro to him. Plus he is totally stumped about the teeth chattering. Anybody else have that?

Seriously, when I look at list of common symptoms, I practically have all of them. And if I wasn't depressed before, I sure am NOW! Even based on the new criteria (not the tender points but the more generalized pain one) I could easily be diagnosed. Maybe I need to find a fibro expert in my area. Or maybe I just need a psychiatrist cause it's starting to feel all in my head.

I've already had to eliminate gluten due to being both allergic AND intolerant to it (though not enormously) and I had high hopes that it would help me. The first 3 weeks were hell, full of withdrawal problems, headaches, etc, but now it's been 8 months and while I breathe better and have less gastro problems (still have GERD and IBS though - hey 2 more symptoms that fit fibro :wink: ) I still have the hallmarks of muscle pain and fatigue.

He is starting my on Cymbalta anyways. Maybe if it at least helps me sleep, it will be a win. He's also doing a nerve conductivity study - to "eliminate other possibilities" but I suspect this of course will come back as normal, as always. He reviewed my brain MRI and agreed it's normal.

I guess at least if it is Fibro, the cymbalta might help. It's not like I want to have fibro, but I do WANT an answer. I'll be leaving my job too, my health being a factor though not the main one, but I need an answer, so I can take action, preferably while I still have insurance with my deductibles met... (yes I've been trying really hard to get answers)

Sorry that this turned into a bot of a vent. Has anyone had good result with Cymbalt?. He warned me it takes quite a while to kick in and to not give up on it. The side effects sound like a lot of what I already have: blurry vision, constipation.

 

[1sweed]

Scarletotter,
I would say to you with the deepest caring and kindness, that in the early stages of fibro, and other illnesses you can not find the answers you need. And many times you go from doctor to doctor looking for answers they can not give you, plus spending lots of money that you really can not afford to spare. I was like you and found myself $16,000 in debt with no way to pay it off or even pay my bills.

I found in the long run it is best to just start learning how to manage the symptoms, as each comes along and then whatever diagnosis you end up with you will be in more control of your body and mind. As for the teeth chattering that could come from the anxiety and depression, you have now. Go see a therapist and find one you like by researching online. Or ask your doctor to refer you. It can be the best thing you might do for yourself to have someone who can listen and offer ways to fight the depression and control your anxiety, and give you someone else to lean on when times are tough.

I once had legs that would not stop shaking and I was also scared of my symptoms. I got counseling and had a personal therapist and was able to leave most of the depression behind and focus on my future with lots of solid coping skills. It will be alright but don't quit your job to go off hunting for answers. Come here and learn how to relax and many other ways to deal with the health problems that are a part of diseases that take years to develop. Try and do your best where you are now and in time the diagnosis will present it's self.

Glad your here on this forum.

 

[Scarletotter]

Thank you, 1sweed. I am grateful I found this forum. It's been a good three years of my symptoms that come in waves. My old PCP kept telling me for 2 years to clean up my diet and lose weight, which I did, but I keep getting worse relapses.
A close friend is a therapist and she recommended someone to me. I was waiting to see the neurologist but sounds like its time to talk to someone and help me work though this.
I know what you mean about managing symptoms. I've had migraines since I was a teen, and while I had drugs for them, I did better just managing my triggers. I guess that's part of my frustration, I have gotten to know my body pretty well, so I really feel like something is not right.

I am not quitting my job because of my health struggles or to focus on finding answers. it's been a long time coming and it is time to move on. I see how this forum can be a tremendous resource and plan to take advantage of it as much as I can.

Thanks again for lending me your ear...

 

[NytViolet]

TMJ spasms would cause the teeth chattering, and it's often seen in Fibro. Just an idea. God bless

 

[terbaer]

Best of luck to you Scarletotter! I know how frustrating it is to try and find answers. I just got results from my neurologist. I have all the classic pain and extreme fatigue symptoms and have been diagnosed with fibro, but also suffer from headaches, pretty much daily anymore. Results? Arthritis and stenosis in my neck, spine and low back. No fix. One more slam of the door. What I'm finding is that as I go on this particular journey, which is different than others trying to find answers, I'm walking toward a new path in life. My journey is walking me toward acceptance and finding peace. I'm working on accepting that I am likely going to have to quit work and am thinking positive about what that will mean with my family. I'd say keep trying to get answers, but at some point, you will need to decide if you've gotten all the answers there are to get.

Hang in there.....

 

[mariposa]

Sadly I can't answer when you'll know what's wrong. :sad: But I can say that I'm glad you found the forum.

I'll also say that it's good to hear your doctor is sending you to others to see if they can help find the problem. At least he seems to be understanding a little bit about fibro and knows the people you need to see.

When it comes to that rheumy who doesn't treat fibro... well, is it possible for you to find one who does? I know that with all these obamacare nightmares, it's often impossible to even choose our own doctors, but if it's possible, I think I'd try.

Teeth chattering... I see someone already mentioned TMJ. I've also had that myself during very stressful times... both that and grinding my teeth in my sleep which leads to other problems, too.

 

[nashvilleshelby]

Oh no! I am sorry that you are experiencing those side effects. I know people who have dealt with some pretty ugly side effects from that drug. However, can you tell if it is making you better in any way?

 

[Trellum]

So sorry to hear you are going thru this, those symptoms sound just awful! Glad to hear your MRI was normal tho, I know how frustrating it is that after seeing doctor after doctor there still isn't an answer. It's hard to find a good doctor and what makes things worse is the fact many of them say one thing then a different doctor will say a totally different thing. I hope you find some answers soon! Best of luck!

 

[NytViolet]

I know it seems like a never ending battle, and if you haven't cried in pain and frustration, you're probably not a fibro patient! I don't know if any of you have faith, but prayer helps me get through the worst times. When family, friends and coworkers simply don't listen (or care), I know that God does. There are many verses in the Bible that speak of healing, and I try to focus on them. I pray for all of us who are suffering and ailing...hugs from me to you all.

 

[Scarletotter]

Oh no! I am sorry that you are experiencing those side effects. I know people who have dealt with some pretty ugly side effects from that drug. However, can you tell if it is making you better in any way?

I have been on Cymbalta for a little over a week now, and the first four days were quite hard. Really bad fatigue, 4 days straight of diarrhea (I lost 3 lbs and am usually perpetually constipated) But I seem to be over the hump of the initial side effects now and the Cymbalta seems to be helping. I've been able to stop taking my tramadol, which I was doing twice a day, and my joint pain and stiffness have noticeably reduced. I also don't wake up tired and sluggish in the morning, even if I have a shorter night. My brain fog has lifted some as well. So this is encouraging.

 

[Trellum]

I know it seems like a never ending battle, and if you haven't cried in pain and frustration, you're probably not a fibro patient! I don't know if any of you have faith, but prayer helps me get through the worst times. When family, friends and coworkers simply don't listen (or care), I know that God does. There are many verses in the Bible that speak of healing, and I try to focus on them. I pray for all of us who are suffering and ailing...hugs from me to you all.

I have the same view as you, even tho we belong to two different religions, but I also find some solace in the thought that when no one else over here cares, I can rest assured G-d cares! Its such a comforting thought and it has definitely helped me to go thru all this awful situations. The power of praying is amazing. I don't know what I'd do if I didn't believe in G-d like many other people I know.

 

[Mowmow]

You need to find a better doctor. One that can diagnose you and treat your other symptoms as well. I am also in the market looking for a better primary care and rhumetologist. Its so hard finding a good doctor. Most of them just want to see you for 5 minutes then ask you to go for general lab work and make an appointment back in a month or so. Its a waiting game they make you play and each time you end up with more co-pays and bills. It's so frustrating. Hopefully you will have better luck then I am in finding a better doctor. Most of the doctors I have seen have refused to give me a referral to see a specialist. It seems like even though fibromyalgia has been around for a while, doctors still do not see it as a legit illness. They still try to diagnose you with something else, medicate you then rule it out. Going around in circles.

 

[GemmaRowlands]

I don't think that the doctor that you have is doing enough for you. You will probably find that it is a much better idea for you to hire another one, who has a better idea of how to deal with this type of condition. A lot of doctors don't believe that this condition is real, and as such will try everything that they can to find another cause - all the while you're still struggling with your symptoms. I do hope that you manage to find somebody who will listen to you, because there are certain things that can be done which would help to make your life better, and these things will improve things for you when they come.

 

[racenutalways]

Fibro, chronic fatigue syndrome and chemical sensitivity are connected somehow, google is you best friend. Much research needs to be done.
Read the 7 foods to avoid if you have fibromyalgia.
Diet is your number one defense, processed foods contain MSG, gluten plus sugars, we fibromyalgians do not handle them well, ofc not all are the same. Cook single ingredient foods, stay away from GMOs, food additives and presciption drugs. My doctor had me on Cymbalta and ohhhh boy I was anxious, suicidal, and foggy, the neck pains went away, but that went away once I went gluten free. Dairy exacerbated my fatigue, 1 cup, would put me to sleep withing 20 minutes. There are chemicals everywhere, salicylates in fruit ad veggies, citric acid(20% MSG) in everything from processed foods to shampoo. If an elimination of gluten didn't help, I'd remove everything else and start with a very restrictive diet, grass fed meats, (they feed their cattle high amounts of GMOs and molasses), poultry that aren't mass produced, potatoes for 3 days, then add one ingredient foods, like organic corn if you could find it, add fish, wild caught fish only, preferably salmon, cashews, and watch fruits and veggies, that have a natural chemical called salicylates, which I react to. Add them one at a time.
Family doctors, rheuma, gastro all have failed me. We need a specialist that deals with multiple chemical sensitivity, or Environmental illness. They deal with Fibro the most.

 

[Trellum]

Hi there, you are right! I think most people with fibro can't handle gluten and dairy so well,most of us suffer from IBS. What an awful mix of diseases, both are invisible! So hard to diagnoze, I was lucky to be diagnosed by a good proctologist when I was a teen, otherwise I'd have no idea why I feel so awful sometimes, specially after eating bread.