I'm ready to give up on doctors

[hyphenate]

For about a year now, I haven't been just at a status quo, I've been getting worse and worse. With fibromyalgia, this is very unusual.

The "learned" doctors keep telling me it's the diabetes, and trying to make me be more conscientious about taking my glucose level and insulin. Well, I'm sick to death of all that, I really am. It used to be, years ago, that some of these damned doctors used to blame the weight for everything. As I say now, diabetes is the new "fat." Regardless of what ailment I bitch about, it's always about the "diabetes."

For more than a year now, I have gone in time after time, month after month, and told them how damned tired I am--completely and totally exhausted. Well, I'm still too fucking tired to do anything. And what's made this worse is that weakness in the legs has progressed to the point where climbing stairs and walking are now getting close to impossible. I was in NYC last week with a friend who saw exactly how powerless I was in walking, with significant pain and disability trying to do so. As a result, when we got home, it too me four days to recoup from the trip.

I live on the second floor, and even climbing that amount is a nightmare. And it is actual weakness that is disturbing me. I fell one day near my desk about two weeks ago, and it took me at least 1/2 hour to actually get up, because the legs are weak and useless. I have been feeling more and more frustrated with these doctors as a result, and I'm ready to tell them I'm going to stop going to the doctors completely if my concerns are not addressed.

Anyone "been there, done that" out there? What alternatives are there? I thought I might try to find another doctor in the hospital system, but I'm afraid they're all the same! I can't deal with it anymore, and I'm ready to just give up on traditional health care. I am already a very stubborn person, and it isn't much for me to completely ignore these doctors and let things slide.

I'm too damned young to be so fucking useless.

[mopinko]

1. yeah, i hate docs sometimes

i have been through quite a few. i don't think i would be getting a handle on my fibro if it weren't for warpy, here on du. she is the one who figured out that i had fibro. when i told the rheumie i was seeing that i thought that is what it was she turned red and hung her head. it was right under her nose, but she treated me for almost 2 years without figuring it out.
there is no substitute for taking charge of your own health, tho. good sleep hygiene is something that is very important, yet docs not only don't say this, they poopoo it when you do. why does the cia know more about sleep that the ama? same with stress.
fibro is treatable, and you should be getting treated. the usual frontline meds are elevil or trazadone, old antidepressants and flexeril, a muscle relaxant. usually both are taken at bedtime, as they help with sleep, an important component.
my advice is to keep trying. i am pretty happy with the docs i have now. for now.

[hyphenate]

6. Thanks

I've actually had the fibro for over 13 years now, and have tried many different drugs and treatments. Sometimes you pick up an intolerance to something you've taken for quite a while, and it is no longer effective. That's how I feel right now with both the Elavil and the Flexeril. The best thing lately that helps to some degree is Neurontin, which does work on the pain for me.

Good luck--it's a long road, and an extremely frustrating one. Some people do better than others in treatment for it, and I've gradually slipped over to a point where regular treatment is not as effective.

[Warpy]

8. It was an uphill battle to convince my rheumy that my fibro

was very longstanding and advanced and had progressed beyond the point where being patted on the head and told to do stretches (I do Yoga!) would take care of it and that I needed DRUGS. The truth is that I can't function without mild narcotic pain med. I literally sit and stare at the wall.

Going in unmedicated and having it show up in my blood pressure and heart rate finally convinced him. I told him what I needed and I got it. You can't fake what pain does to your vital signs.

The real problem is that for too many years, doctors dismissed fibro as being all in our heads. Research that discovered quantifiable physical findings such as a spinal cord awash in pain transmitters has helped to convince them that it's a very real problem needing very real treatment, not Valium and go away and stop bothering me.

Some physicians haven't kept up with the research, though. If you find one of them you can either educate him (fat chance) or find somebody who has managed to keep up. They are out there.

[mopinko]

9. i find neurontin useful, as well.

i am wondering about antidepressants, myself. i know that some people get relief from the fatigue with them. i have decent pain control. but the fatigue and fog really drive me batty.

[hyphenate]

10. I also have clinical depression

so I'm on anti-depressants for that, but either I've built up immunity to it (which I suspect) or the dosage is not high enough, because I still haven't gotten any better, and the energy level is in the cellar. If I were you, I would haunt most of the best medical websites out there, and learn as much as possible. Once that is done, you will know enough to do research on other sites whose credibility isn't as high.

[Ladyhawk]

2. Damn, hyphenate. I'm going through something similar.

I have diabetes and fibromyalgia also, along with a bunch of other things. My mother usually tries to blame the diabetes no matter what else is going on. I learned a long time ago that good doctors are more rare than hen's teeth. Currently, I don't have a good doctor. I have a mediocre doctor. He fills my prescriptions on time and will usually do what I tell him to. However, when I complained about feeling depressed during the winter and perhaps needing light therapy, he said, "I don't know anything about that." Hello? Isn't he supposed to find out? He's done that several times with various issues, so I've learned to search the Internet myself and try to separate the wheat from the chaff. Then I go to him armed with information and ask for a specific prescription. Unfortunately, this takes time and energy. I have the time. It's the energy I lack. If you're sick, it's hard to do this. Believe me, I know. I am SO SICK of being my own doctor.

[hyphenate]

4. Yes

it sounds like you're going through a similar thing. I applaud you for having more patience than I--I have finally crossed the threshold.

[Ladyhawk]

14. So what do you do when you cross the threshold?

I'm not sure if you'll find this since it's been awhile.

Anyway, I tried once again to find a more proactive health care practitioner. I had a sinus infection. She prescribed Flonase and Augmentin. The Augmentin failed, so she prescribed Levaquin. I had a violent allergic reaction that lasted two days. I developed huge angioedemic hives on the back of my neck, so swollen that it looked like two red inner tubes. The back of my head was swollen, too. I mostly sat because to move was to invite a case of the itches.

So, I sat for two days while my head throbbed. I called, asking for another prescription to take care of the sinus infection and nobody bothered to call me back. I couldn't follow up for several days. I told the receptionist that was unacceptable, but of course, nobody gives a shit.

About three years ago something really bad happened to me. I ended up hating nearly everyone in the health care profession because of it. When I complained about a nurse that should have been fired, nothing happened (of course).

So, if you "give up" on doctors, what else is there to do.

[siligut]

3. I can explain

Diabetes is the new fat? That is hilarious! Diabetes is epidemic in the US, and it is
concrete, they can treat it. You don’t say what your A1C is, get it to 6.5 then go in and they will listen to your other concerns< concerns doesn’t really cover what you describe, really it sounds like you feel just awful.

Do you know about homeostasis? Our bodies use our liver and kidneys primarily to maintain homeostasis, the state in which we function best. Think about a home with the heat turned up to 120F, the doors are locked so you can’t leave; do you get some much needed organizing done? Nope, you cover yourself in cool towels and sprawl out on the linoleum. When blood sugar is high that is what your cells and organs do.

That is why your docs ask you about your blood sugar, unless that is under control nothing else is going to be effective. Good luck. Sounds more like MS than fibro to me. Sorry.

[hyphenate]

5. Thanks for the info

I had my glucose level down significantly for months at a time. And every symptom I had was still there, which is why it's so frustrating. The docs kept telling me I would "feel better" when my glucose level was lower, and by golly, they were wrong--completely wrong. This is the battle I've been waging. And yes, I do feel completely awful most of the time. I generally can't stay awake for more than a few hours at a time. Level of energy on a 1-10 scale is 2-3 at best. The stairs, as I mention in the OP, have gotten to be a major battleground for me to handle.

I've had fibro since 1993, and it predates both diabetes and CAD by over 6 years, so the pain and misery of that were with me long before anything else. Back pain and exhaustion were among the earliest symptoms of the fibro. In fact, I was an early student of fibro information and literature, and right from the start of the diagnosis I was involved with my own treatment plan. That's one of the reasons I'm so frustrated--the focus is all on the diabetes and not on such things as handling the exhaustion and the muscle weakness. The muscle weakness is relatively new to me--it has never manifested itself before now--now meaning its appearance about a year ago. It also makes walking a major chore for which I will be punished the next few days with the inability to do anything except sleep most of the time. It makes my lower back spasm to the point where the pain is overwhelming. I have other "new" symptoms for about a year now--stumbling, falling, mind in a perpetual stage of "fog," attention span very low.

I've wondered about whether MS has any bearing on my symptoms, and I am going to ask to be tested. We'll see.

Thanks for weighing in.

[Lurking Dem]

7. Sounds more like lupus than fibro.

You need a really good rheumatologist. And you need to see a cardiac guy to make sure the exhaustion isn't heart related.

As to your diabetes control - it is key. But a few months of good control cannot undue years of damage. It is very important that you maintain good control in order to make any treatment for other inflammatory disease processes more effective and to prevent further damage.

Make sure you are getting plenty of Essential Fatty Acids. Avoid nightshades (tomatoes, eggplant, etc.) because they can make the swelling and pain worse. List your symptoms on paper so you don't forget anything when you talk to your doctor. Sometimes it helps to keep a symptom diary.

[siligut]

11. Thought about you last night.

I don’t want to add another problem to your list and if there is a way to view all of a user’s posts, I don’t know about it. Have you had an MRI of your back? The weakness you describe in your legs sounds a bit like compressed spinal nerves. Also, I have heard of MDs who specialize in fibro, don’t give up hope.

[LynzM]

12. I was going to say something similar, hyphenate

I'm sorry to hear that you're in some much pain and weakness and exhaustion. :hug: As a Type 1 diabetic, myself, I understand the frustration of managing diabetes day in and day out. Do you know what your HbA1c value is? If it's <7 (ideally <6.5), then you should be able to point your doctors to that and let them know that they really need to look for another thing to examine.

Failing all that, maybe look for a new doc? I'm so sorry you're feeling so badly. I hope that you get some good answers, and soon. :hug:

[Bluestar]

13. I have similar symptoms--the weakness in legs, etc.

I was diagnosed with polymyositis in 2000; now they think it is a different myositis called IBM. It is an autoimmune disease of the muscles. The first thing to go for me was climbing stairs, then I couldn't get up off the floor. A rheumatologist should be able to diagnose.

There is no cure, only treatment with steroids and arthritis type drugs. These did not work for me, so if it turns out this is your diagnosis, question everything as I think the drugs side effects made me worse. The prednisone they gave me threw me into diabetes, so beware of taking these steroids. If I knew then what I know now, I would reject regular medical treatment and go holistic all the way, but this might not be right for everyone. My naturopath has kept me walking, functioning this whole time. She uses vibrational healing methods and supplements. I do my own healing techniques as well. I apparently am doing much better than most.

This is a rare disease (only 30,000 in US) and many doctors have never seen it. Try www.myositis.com for information.

Good luck to you--I hope it is something simpler than this.

[nashville_brook]

15. do you normally have low blood pressure?

there's a theory about Chronic Fatigue Syndrome that it's caused by "cardiac insufficiency" where the fatigue is caused by a lack of blood getting around your system. according to this theory, cardiac insufficiency also causes the fibro, as the pain is the result of oxygen starvation and resulting toxicity. other symptoms of the toxicity can include food intolerance.

there's three stages of CFIDs:
the "trigger" -- a viral infection usually (some people don't remember the trigger, some do).
the "drumroll" -- where you have no energy, experience brain fog, and develop pain. then,
the "dynamic" phase where you get the "push-crash" problem. this is where a little bit of exertion is paid for later with exhaustion and pain.

a common feature of cardiac insufficiency is that you can't do those easy things you used to be able to do like climb stairs or go shopping.

the researcher doing the most in the area of cardiac insufficency is Dr. Paul Cheney in Asheville NC. here's a link to a bunch of his articles:
http://www.dfwcfids.org/medical/cheney.html

here's a link to an article specific to the cardiac issue:
http://www.dfwcfids.org/medical/cheney/heart04.htm

here's a link to an article on the "three phases"
http://www.dfwcfids.org/medical/phases.html

on this website there's definitions of CFIDs and FIBRO that might also be useful for comparison.
CFIDS:
http://www.dfwcfids.org/cfids/index.shtml
FIBRO:
http://www.dfwcfids.org/fms/index.shtml

[MamaBear]

16. Yes.

I'm type 2 diabetic and everything that's wrong with the whole effing world seems to be that I have excess adipose tissue. I have been complaining of crushing fatigue for over a year, with pain in my legs, weakness, and dizziness.

I think I may have found the answer: when I Googled actos side effects (the oral hypoglycemic I've been taking for years), I got a site called askapatient.com. There I discovered that it evidently isn't unusual to experience side effects like that from the medication. Needless to say, I've stopped the medication and am going to try it on insulin alone for a while, to see if I've nailed the culprit.

If you are taking an oral hypoglycemic, check http://www.askapatient.com. If you are taking Actos, you might want to request a different medication.

Best of luck to you. I live in NYC and I know how difficult it is to get around when you feel like you're walking through jello all the time.

[kdmorris]

17. All my doctors think that everything is due to

my thyroid or Type 2. I know how you feel. I'm really sick of doctors. I'm sick of telling them the same thing over and over and having them dismiss it as "crazy talk". I just got a new doctor, though, and have a bit of hope again. However, since I have all the copies of my blood tests for the last 7 years, he kind of thinks I'm nuts, too. I did explain to him that I'm not crazy. I keep all this documentation so that I don't have to try to remember everything every time I get a new doctor.

My sex hormones are all low and I'm really too young to be dealing with any sort of Peri-menopause (although not completely outside the range of possibility, as I'm 37). So, they are starting to say.. well, that's the problem. Um... Ok, fine... I don't give a shit WHAT the problem is, anymore. I just want someone to tell me how to fix this overwhelming fatigue. I shouldn't have to take a nap every day, and it's weird to have to do it in my car every day. I ask to increase my thyroid medication (all the symptoms are present again), but since my TSH is suppressed, they won't do that either.

Grrrrr, I just needed to vent. I'm so sick of doctors. I'm getting ready to just be my own doctor and hope I don't kill myself.