Old 03-15-2016, 04:35 PM #1 (permalink)
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Default New and frustrated

Hi there, I am new to this group so I hope I am doing this right.

I was dignosed with Fibro a couple of years ago along with degenerative disc disease. I have had to stop working and am now on disability. I am in a lot of pain almost all day every day any more. My Dr. doesn't know anything about the disease and only wants to try different drugs every time I go in. I have stopped going because it isn't doing any good. I asked her if she would please refer me to a rheumatologist. She tried to refer me to 3 different Dr's and none of them will see me because I am on Medicare and Humana. I am frustrated and I don't know where to turn now. Any suggestions?
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Old 03-15-2016, 05:54 PM #2 (permalink)
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Default Re: New and frustrated

Hey there,
Sorry you been having such a rough time. Finding a good team of doctors are hard what I can say that helped me is calling 211 information and asking them to find me a rheumy (rheumatologist) who takes medicare so you won't have to waste your time.I find that this is the best way to go about it and you can have you Dr make a referral to the rheumy you found or have them mail you the physical referral and you can bring it with you to the appointment. I hope this works for you lots of love and hugs
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Old 03-21-2016, 01:22 PM #3 (permalink)
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Default Re: New and frustrated

I share in your plight Karelmiller. It seems you have reached a turning point and would like to turn a new leaf. For a start, your fibromyalgia has heralded disability which you must not admit to be inability. You can start with Ergocalciferol or Vitamin D therapy. Some patients diagnosed with FM turned out to be suffering from Vitamin D efficiency. What about using the helpline given by this forum? Check it out. Diet helps. Cut out caffeine and take Magnesium supplements to combat depression which worsens FM. Deep massage of aching zones should be done. Consult another physician about whether you can start taking Xyran and Savilla, both used to combat FM.
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Old 03-21-2016, 07:17 PM #4 (permalink)
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Default Re: New and frustrated

Uhg! The medical system in America!!! Can you call your insurance (Medicare/Humana) and ask for reumotolgist in their network and in your area then ask your doctor to send in a referral to them? I have not been to a pain clinic but I believe they are also becoming skilled at helping fibromyalgia patients manage their symptoms. aldo could ask your pharmacist if they know which reumotolgist in your area take Medicare. Try not to let it frustrate you to much (you have a right to be frustrated, I'm not trying to take that away from you but it will just do more harm to you then good).
Don't know if any of these tips will work but it's all I've got for now. So let us know and maybe someone else that has exsperiance with this will c it and chime in. ; )
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Old 03-28-2016, 01:09 PM #5 (permalink)
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Default Re: New and frustrated

Thank you all for your help. I called the 211 info and they only referred me back to my insurance co. I have called every Rheumatologist on my plan and they all say they won't treat FM unless I have an autoimmune with it. I am researching alternative treatments it this point.
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Old 03-28-2016, 01:51 PM #6 (permalink)
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Default Re: New and frustrated

Fibromyalgia is considered in the "autoimmune" catagory. Not sure why makes more scene to me to be neurological or even digestive, but to be honest I think no doctors want this disease! It's really just been recognized in the past decade as legittamit and most did not study/learn about it in Med school, so treating it means advancing their education/updating courses. Many still believe it to be psychological. Which I would recommend a shrink that treats fibro patients. You need at least one doctor familiar with your condition. Keep looking.
I'm sorry I'm not more useful.
Maybe try listing what meds. And supplements You have tried and get other members input. We have been through a lot of trial and error. Unfortunately what works for me might not work for you. But may the right meds, supplement and combo will come along.
Are you taking a quality vitamen, extra vitamen D and magnesium? These seem to help almost all fibro sufferers. Malic acid also seems to be very helpful to many (including me). And quality fiber can help.
Just because is alternative doesn't mean it's not as effective. In fact many pharmacys came to be from compounding herbs that our now considered alternative. New does not always mean bigger and better, it could just mean a pharmacsuitical company making money!!!
Keep us posted
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Old 03-28-2016, 05:45 PM #7 (permalink)
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Default Re: New and frustrated

I have helped my daughter get a lot of improvement using supplements, diet changes, and lifestyle changes. We had the same experience that you did with the doctor. After about ten doctors and sixteen years of trying conventional medicine, we decided that medicine has not reached the point that they can help my daughter. They were focused mostly on treating pain, and pain is only one of about a hundred symptoms of Fibro and CFS/ME. Treating pain didn't really help much with the pain, and caused side effects that made the overall situation worse. There was weight gain, terrible mood symptoms, and lyrica caused x-rated slasher dreams and horribly depressed/angry mood (other friends have agreed they also had ths side effect -- very strange and not appropriate to give a child).

I would not say that's true for everyone -- that medicine and doctors can't help fibro. In particular, I believe that many adults probably have comorbid problems, such as joint problems or back problems, and addressing those medically is likely to reduce the pain signals. Since any pain signals will be amplified by the fibro, reducing the source of these pain signals is key. But, doctors are the first to admit they don't have a cure for fibro, and they have to take a "multi-modal" approach (meaning medicine won't do the job alone, if at all).

We found a couple of gene SNPs, using 23andMe, that were causing some problems for my child. She has two MTHFR heterozygous mutations, meaning she should avoid folic acid and supplement with L-5-MTHF (a bioavailable form of one of the B vitamins), and a mutation which means that she does not efficiently convert beta-carotene to vitamin A, so we need to supplement with extra vit A (more than normally recommended). We also use all the most frequently recommended supplements for fibro, and over the years, have found more effective forms. I put a comment under alternative treatments forum, listing what we use.

Hear are some of the biggies --
Magnesium (we use Natural Calm),
High doses of vitamin D3 (5,000-10,000 iu per day, and up to 50,000 iu daily for up to a week if someone around us is sick),
malic acid,
Twinlab Stress B vitamin,
L-5-MTHF,
fish or krill oil
Co-Q10
Wellness Formula when someone around us is sick
nasal rinses.

In addition, she has changed her diet to have more fruits, beans, rice and legumes, and avoid gluten for periods of time, which seems to reduce her fatigue, brain fog and pain. I have a friend whose neck pain vanished when she quit gluten, and another friend that had the same experience after hearing her story. My daughter also eats a lot of spices, mexican food, indian food, turmeric/milk drinks, cilantro, ginger. Spices seem to help her symtpoms. And, also a variety of adaptogens (beneficial herbs), ashwaganda, ginseng, etc..

There are alternatives, if the doctor is not working out for you. Doctors are ONE resource, and often the beginning of the journey, but there are many other paths to go down, like alternative treatments such as accupuncture, supplements, diet changes, lifestyle changes, stress reduction, supplements. It took us many years to get here, but we are seeing measurable improvements in managing symptoms and raising the threshold for flares. It can be done!

Our doctor also tried to refer us -- the orthopedic to the neurologist to the rhematologist, who tried to refer back to a neurologist, who referred to a pain clinic, that only seemed to care about pain and not he hundred other symptoms we were dealing with. I have come to understand that there is really no such thing as a "fibromyalgia specialist". Doctors know that they may not be able to produce significant improvement in this condition, and so they try to refer patients such as my daughter to someone else.

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Old 04-13-2016, 09:29 AM #8 (permalink)
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Default Re: New and frustrated

Quote:
Originally Posted by Eyesup View Post
Fibromyalgia is considered in the "autoimmune" catagory. Not sure why makes more scene to me to be neurological or even digestive, but to be honest I think no doctors want this disease! It's really just been recognized in the past decade as legittamit and most did not study/learn about it in Med school, so treating it means advancing their education/updating courses. Many still believe it to be psychological. Which I would recommend a shrink that treats fibro patients. You need at least one doctor familiar with your condition. Keep looking.
I'm sorry I'm not more useful.
Maybe try listing what meds. And supplements You have tried and get other members input. We have been through a lot of trial and error. Unfortunately what works for me might not work for you. But may the right meds, supplement and combo will come along.
Are you taking a quality vitamen, extra vitamen D and magnesium? These seem to help almost all fibro sufferers. Malic acid also seems to be very helpful to many (including me). And quality fiber can help.
Just because is alternative doesn't mean it's not as effective. In fact many pharmacys came to be from compounding herbs that our now considered alternative. New does not always mean bigger and better, it could just mean a pharmacsuitical company making money!!!
Keep us posted
You have no idea how much I hate it when a doctor suggest that my pain is psychological, it's even worse when they do find out i'm seeing a psychiatrist (to treat my OCD, depression and anxiety, and then start saying it's all in your mind. Yes, like the pain I had in my back and chest was not real. Idiots. I almost fought the last one over that... very few decent doctors left.
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Old 04-18-2016, 12:02 AM #9 (permalink)
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Default Re: New and frustrated

I had an appointment with my family dr last week. She is frustrated along with me because she doesn't know much about this. She has tried to get me in to see someone else without any luck. She is not totally convinced that I have fibro. She drew more blood and I am awaiting the results. I have been keeping a pain diary so maybe it will trigger something for her.

Thank you all for your support and suggestions
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Old 04-18-2016, 01:16 AM #10 (permalink)
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Default Re: New and frustrated

Of course I have a couple of suggestions for you. The first one and more important is to seek another opinion this is always the best move after being depressed with this "disease". I'd move on and on different opinions from medics if you have the way to do it of course and if you don't have the amount of money necessary to do so just go to your most trusted Doctor out there. I hope this helps you and you find relief within yourself. Take care a lot.
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Old 04-25-2016, 12:12 AM #11 (permalink)
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The dr I am now seeing doesn't believe I have fibro. She thinks something else is going on. Wednesday I have an appt for a brain scan. They are testing me for MS. Hopefully know for sure on Thursday
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Old 04-25-2016, 10:14 AM #12 (permalink)
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Default Re: New and frustrated

Hi Karen, I'm with gryfalcon on this; I think trying some supplements to your diet may help.
I took a high dose CoQ-10 the other day, just one supplement, and so far 3 days I'm headache-free. Coincidence, maybe, maybe not.

I don't know how much a rheumy will help; I was diagnosed by one, but he did not give me a plan of care, suggest any meds or particular diet/supplements, nothing. Told me to "rest" my arms. I told him that's what I had been doing for 8 months! He kind of mumbled and walked out of the room.

Sorry about the pain, I'm sure we all are/have been where you are now. I suggest looking around other threads, you may want to try some alternative stuff. One member said that a TENS unit was working for her. You can get an analog one for <$20, so it wouldn't be a big investment.
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