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Now what do I do?
11 Replies
seedbeads - August 15

OK, so here's the rundown so far. Got an official diagnosis in July (everyone's reaction to this was "duh. We knew that."). I got it from an immunologist who couldn't find a single thing wrong with me after running a barrage of tests. He told me "Yep, looks like fibro, it's nothing you need me for, so go back to your family doc."

Well, here we are, and my family doc is NOT HELPING. Every time I go to see him, he tells me, first and foremost, that I just need to learn to meditate, and that I should go see a naturopath (he knows I can't afford that). He won't give me anything to help with the pain, and outright refused to give me anything to help me sleep - his explanation was "that's not the problem, so it won't help." The only other thing he's given me was a SNRI called Pristiq, whose main side effect, funnily enough, is horrible insomnia. I don't even think he's aware of the side effects, he just handed it to me because he happened to have samples of it. I refuse to take it.

So, long story short, he isn't helping me with my fibro. He seems to have the "it's all in your head" attitude and is constantly pushing meditation as the answer to all of my problems. I'm at a total loss. There are no doctors taking patients around here, and we all know what happens when you tell clinic/ER doctors that you have fibro.

So.. what now? I'm having a really rotten time right now, between pain, headaches and nausea, and it's causing some major tension in my family.

 

kvc33 - August 16

I'm sorry that you are not getting the help you are seeking but I do agree with your doctor that both meditation and naturopathic medicine can be helpful for fibro. If you really can't afford to see a naturopath, you can try some natural methods on your own. Start googling natural methods of dealing with your symptoms. I don't know what you have already tried. Most of us have food allergies and the main culprits are gluten, sugar, dairy, soy, peanuts, eggs, and yeast. I think gluten is the most common which means no grains that contain it. Try real ginger for the nausea. You can buy it in powdered form or as the root. The key too is determining what is most likely causing your symptoms as everyone is different. Start writing down everything you can think of about your symptoms and what you think may be going on.

 

lucky13 - August 16

I would suggest finding a new Dr. Also a rheumatologist is a good Dr to see for FMS treatment. Yes learning to relax and destress is important but so is sleep. I can understand him not wanting to give pain meds out, that's an iffy subject. If you can get your sleep improved you will see improvements everywhere else.
My rheumy sent me for a sleep study and found out I have sleep apnea, not that I am recieving treatment for that I do see an improvment in my sleep and my daily fatigue and pain issues. He aslo perscribed me a TENS unit which I find helpful for my back and shoulder pain.
Antidepressants are the main pharmaceutical treatments to help fms, I have found improvment there also, I take Celex 40 mg. It took my about 5 wks for my body to adjust to it, at first it caused problem with my sleep and some vivid nightmares, but one my body adjusted to it, those problems went away.
I am very lucky, my primary care Dr is an internal maedicine Dr who also specializes in medications, he is very knowledgable in the different types how they work independently and together. My Drs work together to help me overcome the pain. Tomorrow I see my Sleep Dr for a follow up.

In treating FMS you have to be your own advocate, do your research, ask questions and if your Dr is not knowledgable, or does not listen to you, you can't be affraid to find a new Dr. Natural remedies don't work for everyone, just like different meds can react to different people differently, but it is trial and error to find what works for you. Just remember when starting a new drug, it can take weeks for your body to get enough in it's system to see a difference (depending what it is)

Good luck.

 

seedbeads - August 17

I'm not at all afraid of finding a new doctor, there just simply aren't any in the area right now. He did send me to a rheumatologist, except that the only one he could get me in with specialized in sports injuries and osteoarthritis, and wouldn't even consider fibro - he kept sending me for tests that kept coming back negative, trying to find an explanation he could accept.

My doctor isn't willing to prescribe anything for sleep, or any other kind of treatment like TENS units. He insists that they're not going to help me. I've already tried the SSRI route and I don't tolerate them well at all. I can't afford to be a zombie when I've got two little kids to look after full-time. I don' tolerate most painkillers to begin with so that's out. My diet is already restricted as I've developed a dairy allergy over the last few years, and there's a lot of things I can't eat because I have such horrible reflux. I've tried eliminating gluten but it didn't make a difference to my pain level and I couldn't afford to keep at it more than a couple of months.

When I can afford a naturopath I'll go, and I'm also trying meditation, but these things don't help me sleep today, or tomorrow, or even next week. As far as that goes, I'm stuck.

 

Tspringer - August 19

You doctor says that treatment option X will not work for you. Has he given you a specific medical explanation of why not? Have you brought him research materials that you have gathered that indicate otherwise?

If he is the only doctor around and he is denying you access to a treatment option despite you providing him with research materials and a well reasoned argument as to exactly why you feel this approach may benefit you while he can give you no valid explanation for his denial.... I would complain to the State medical board. And get another doctor even if it means driving an hour to the next town.

Michele (my wife... with fibro) and I and the primary care physician we now work with have evolved an approach to where currently we lead the treatment effort, not him. He is willing to write a prescription for pretty much anything we ask for. But when we go see the doctor, its not what I would call a "typical" patient visit for him. We have materials to present, results (charted in graph format) from previous treatment efforts to discuss and a reasoned approach to support what we may wish to try next. Usually when we are at the doctors office its because some symptom or symptom set has flared but even then we try to have some ideas on possible causes and next steps to look at taking when we go. Its been a slow process of investigating, implementing, measuring and adjusting that is ongoing (and will be) but it has been effective at improving Michele's fibro symptoms.

We have found that very few doctors really understand how to effectively approach treating fibro. Counting on them to lead your treatment effort is likely a dead end. Instead, try viewing your doctor as a partner who can validate your own research and facilitate you implementing what you want to try.

I do hope you can find a better doctor!


Tery

 

Tspringer - August 19

Seedbeads....

Relative to sleep, my wife has really suffered with sleep issues. Its clearly one of the primary drivers of her Fibro.

About 5 months ago the doctors wanted her to get a sleep study done. It was going to cost us $3K (our insurance would not pay). Hmmmm $3K to go to a strange place, have electrodes stuck to your head, get into a strange bed to sleep... and they think the data they will collect from this scenario will be representative of a typical night sleep?

I found the entire concept absurd.

I got to doing some research and learned about the Zeo. This is a small device attached to a headband that you wear while sleeping. It measures brain wave activity and wirelessly transfers the data to a bedside data analysis device built into a clock. It provides TONS of interesting data: how long it took you to get to sleep, how many times you awoke during the night, what percentage of your sleep was light, deep or REM sleep, what stage of sleep you were in when you awoke in the morning (a big factor in grogginess and morning fatigue). It even has a setting that will trigger the alarm during a set range of time when its measured you as being NOT in REM sleep as this helps avoid grogginess.

Anyway, when I read about this thing I laughed as I though it sounded like marketing baloney. But the more I read about the research and development that went into it the more interested I got.

So I bought one.

It works. The data it provides is great at giving you a consistent means of measuring your sleep and comparing the effects of different sleep aimed strategies.

We used this to try lots of stuff. Less TV before bed, reading before lights out, total dark vs night light, white noise or perfect quiet, melatonin in various amounts, melatonin with gaba, melatonin + gaba + 5HTP (NOT a good idea.... for us at least). We tried each different thing for 3 nights. We made only 1 change at a time.

This is ongoing, though right now we are not making so many changes as Micheles sleep has gotten much better. She now takes melatonin 10mg liquid + gaba + valerian and she read before lights out, very dark room and a fan for white noise. Thats been what works best... and we can see actual charted results. She gets to sleep faster, wakes up less and gets more REM sleep.

Anyway, something you may want to think about.



Terry

 

seedbeads - August 19

Interesting about the sleep monitor... though I could never sleep with something on my head like that. I can't even sleep if my clothes aren't sitting just right, and don't get me started on sheet wrinkles. Also it's way out of my budget at the moment.

I did the sleep lab thing several years ago. All they found was that I take a long time to get into a deep sleep.

So far not much has helped me as far as sleep goes. Everything only works for a little while, and leaves me very groggy the next day - even the melatonin. My problem is that if my rhythm gets thrown off even a little, I get stuck in a vicious cycle of getting to sleep later and later despite having to be up by 8 at the latest (which results in a lot of napping).

Anyway if there was a State medical board to complain to, I would, but this is Canada. I could complain to the CPSO but most often that goes nowhere. It's not as easy to get what you want when you don't have to pay for it yourself.

 

kvc33 - August 20

I looked into the Zeo in the past, Seedbeads. I was interested until I read a lot of user complaints about accuracy. The company actually admitted to a customer that it can read certain sleep states as awake and not asleep. Anyway, the device itself won't help you get a better sleep. You'd still have to fool around with all the variables. Most of us have Delayed Sleep Phase Syndrome. Our bodies make hormones at the wrong time of day and that affects our ability to sleep during 'normal' hours. My body likes 2am to noon. I have found light therapy to be somewhat useful but since I have Restless Leg Syndrome and other problems it seems that whenever I get my sleep cycle around it goes back to where it wants to again. I'm no longer fighting it. I'm in drug withdrawal right now and will be for the next 8 months or so and that's all I can handle. I just sleep when I can.

 

seedbeads - August 21

Funnily enough, if I get myself into more of a night shift cycle, where I go to bed in the early morning and sleep until the afternoon, I have absolutely no problem maintaining that pattern. I wake up after a good 7 hours feeling rested and ready to go.

Unfortunately, I've got two little ones who get up at 7 AM and my husband works 8:30-5, so it's simply not an option for me these days.

It does make me wonder if it's actually a problem getting to sleep or if I'm just in the wrong country. ;)

 

January - August 21

Hi all - sorry I'm pressed for time right now, and just skimmed this really fast, but had a couple remarks.

I like Terry's approach of taking in lots of research and getting the dr. to work with him and the wife. I've only found a couple people who will work with me though. Most doctors want to be the "boss." I also think it's so much harder to deal with the disease when it's just one person alone, especially female (we're supposed to be incapable of understanding science or medicine)… And it's just harder to keep going, harder to keep track, maybe harder to have the credibility at the dr's office when you go in alone...???

And about the sleep problem. As you know, I am a huge fan of melatonin - even with the supposed risks. I haven't had the sleep study done, but I am SURE I have a delayed sleep cycle. No matter where I am, my brain "wakes up" at night, been that way since I was a toddler - my mother was the same -- insomniac her whole life, and slept in very late. The times I worked 8 to 5, I had to take sleeping pills at night and caffeine pills to wake up, and usually I was sick a lot. I can't eat in the morning, I can't think straight, no matter how much I've slept.

The times I worked a 3 to 11 shift, or some kind of evening/night work, I functioned well, was happy, did not get sick; it fit my natural rhythm perfectly. I dream the best in the morning light! When I don't get that REM sleep, I don't feel good. Now, I can take melatonin, a little Ambien, and maybe even go to sleep by 10 pm. It doesn't matter. I still want to sleep in until late morning, so I'm not getting the "right" kind of sleep at night.

And, this was true for me even back in the days when I did NOT have television or computer or any kind of electronic stimulation to keep my brain awake. I used to lie in the dark for hours with my brain going 80 mph.

I think I posted here before that I read about "Night Owls" being confirmed by some research. There's even a personality profile that goes along with it. Our brain chemicals are different, and we "light up" at different times. Google "night owls vs. early birds" for some very interesting reading! Now I swore I would be off the computer by 10 pm and it isn't working! Hugs to you all!

 

cincin - August 28

So sorry to hear that you are recieving no assistance with this affliction. When my dr diagnosed me I asked him what it was, his answer-go home and look it up on the internet. I have seen two rhuematoligists(getting the second one was like pulling hen's teeth) both looked at me and told me not to come back there was nothing they could do for me. wonderful.I do not tolerate pharms well so I went to the health store and talked to them. What I use helps.Omega3s, evening primrose and Fibro-M. They help ease my symptons with out side effects. Understand that even natural products can and have reacted with people the same as pharms, but its worth a try.Most of what I do for my fibro has been my own research and trial and error.Change diet, different exercises, talking to people that understand muscle patterns and reactions-body builders,personal trainers. It takes time and discipline on your part to regain your strength and self esteem.I have tmjd and get headaches alot, so I discussed it with my dentist. Voila a custom fit nightguard-what a difference.I even wear it during really bad days and it helps. Ask your doctor for a second opinion-it's your right.Ask around, family, friends about their doctors and how happy they are with them. Have someone in mind that you want as a referral when you go in.Keep pushing and don't be afraid to stand up for yourself.Ask a family member to go with you and attend the visit so they can understand that its real.Quite honestly your health status is in your own hands and it takes alot of time and trial and error to get the right combination.Good luck.

 

Nee_ster310 - September 12

Hey Seadbeads,
I would like to share an experience that me and my mom went thru. She had many doctors that shez been with (like every other patient with Fibro)and the same answers with everyone. Now, My mother went to the a new doctor about 4 months ago and the doctor refereed my mom to go and order a product online to try for her fibro. Its an all natural product. He said this product has the highest antioxidants in the world. Its called Kyani. Well, I and my mother tried it at the same time with in the 2ed week I started not feeling the pain. For my mothers fibro it took a month and a half till she really felt the fibromyalgia begin to cease. Within the 3 weeks my mom started sleeping and it has been 14 years since she slept thru the night and now she is snoozing away. I asked the doctor if I can give this info to friends and family and she said its for everyone who would like to order. I call Kyani's customer service at #208-529-9872 #283378 my mom orders online at Kyani.net and give them the docs Distributor #283378 The three product that Dr. Baird let us know about is Nitro Extreme, kyani sunrise and kyani sunset. I just went ahead nd got my own membership #.This stuff truly works and wished that all doctors knew about this. Well, All I can say is try it for yourself. I cant believe that doctors dont know about this. There are thousands of people that needs help and this is what they need.

 

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