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7 Replies
Rahiin - December 1

Hi guys, I just found this site and thought I would give it a try since I personally don't know anybody with fibromyalgia, and I am not in contact with any of my family so I am not getting any support from them.
As you guys of course know there are a million problems that someone can encounter when he/she has fibromyalgia, so I'll just ask you guys about the one that I'm not so good at dealing with. I have had quite the dilemnas over the months since my symptoms starting showing about a year and a half ago. I was disagnosed twice actually but I am not on any treatment plan because my doctors keep passing me back and forth between each other without doing much help. I have read many of the "bad doctor" stories on here and can instantly relate to them. I'll try not to rant about them lol.
My condition had significantly gotten worse these last couple of weeks, and I'm desperatly trying for some doctor anywhere to help me, but so far all I have is some Lyrica which helps a little bit but only a little bit. After having this condition for a year and a half with no treatment plan has really taken a toll on me. I have to be careful and take extra time with every task that I do, but now it has gotten to the point that my daily chores, work and school is becoming severely negatively affected. I am tired of living this way and feel that, without being snotty, that I should not have to live this way.
I do many of the suggestions that I have seen on here, good diet, excersise, hot tub, herbal medicine and tea, but it is not enough to help me to be able to function without it being a very clumsy, slow or stressful.
So I guess my questions are: How do you suggest to deal with doctors who pass you around all the time? Should I tell my boss and teachers that I have this condition?
I appreciate any help and support that I get. I hope I did not ramble, I tend to do that. If there is any additional information that anyone needs so that they can understand/help me better, I am more than happy to explain.
Thanks again.


Fantod - December 2

Hello Rahiin and welcome to the board! This is the most comphrensive site on the Internet for information about Fibromyalgia (FMS). There is a lot of good information in the blue boxes on the lefthand side of this page. And, we have a good group of people available to offer support, suggestions or just listen when you need to rant.

Fibromyalgia (FMS) is a disorder of the central nervous system. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. OTC remedies like Tylenol do not work for the type of pain associated with FMS. Fibromyalgia is recognised by the National Arthitis Foundation, The Centers for Disease Control and the World Health Organization.

It sounds like the doctors that you have both have a problem with treating FMS. Rather than tell you outright that they can not be bothered, you are the proverbial monkey in the middle. Personally, I would report both of them in writing to your insurance company and the hospital system they are associated with. They are both violating the Hippocratic oath by not providing proper patient care.

You need to find a rheumotologist who treats FMS. You have two options. Go to the National Fibromyalgia Association website where you can see a list of fibro-friendly health care providers in your area. Or, you can call your local hospital and ask for the physician referral service. See if they can recommend a rheumotologist and/or a pain specialist (I have both) that treat Fibromyalgia.

One of the reasons that you are in so much pain is that you are not getting restorative, deep sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. Treating the sleep issues associated with FMS is a crucial part of treatment. You should be on a sleep aid like Amitriptyline.

There are now three prescribed medications used to treat FMS. You have probably seen the ads on TV for Lyrica. The most common complaint associated with this medication is rapid weight gain. It may not happen to everyone but when it does most rheumotologists are not proactive about changing medications. The second choice is Cymbalta which addresses both the pain and depression associated with FMS. I use Cymbalta myself and have had pretty good results. The third and newest choice is Savella. It has been used in Europe for decades and was approved for use in the USA last year. It is going to take time and a lot of tinkering to find the right combination of medication and doseage to make you more comfortable. At a bare minimum, it will take two weeks or longer once you start on something to notice any difference.

With regards to to diet, if you use an artifical sweetner (including Splenda) get rid of it. If you need a sweetner, use something made with the nontoxic Stevia plant like Sun Crystals or Truvia. You can find the latter in the grocery store alongside the other sweetners. Try to avoid eating deep fried food, lunchmeat or red wine (nitrates) as these items will also ratchet up your pain level.

As an interim step until you are able to get proper medical treatment you could try Curamin for pain. Curamin is a spice that is highly purified for this application and comes in capsules. I use a brand made by Terry Naturally which you can find online or in any good health food store. For sleep, Calms Forte and/or Melatonin will help. They are also available in any health food store or the Vitamin Shoppe. Make sure you understand how to use these homeopathic supplements.

If you have not done so already, you could also purchase "Fibromyalgia for Dummies" through Amazon. Like the rest of the dummies series, it contains good basic information. I'd also like to gently suggest that you consider finding a therapist who deals with chronic illness. Many of us see someone and find the extra support very helpful. I feel that this especially important given that you are not in contact with your family. You can call your local hospital and ask for the physician referral service. They should be able to recommend someone. The other option is to use Google and see who pops up in your metro area.

I believe that you should inform your teachers that you are ill. You can and should be accomodated when your symptoms are interfering with your ability to complete assignments. As for work, you will have to use your best judgement. If you do decide to speak to your employer, print out some information from the National Arthitis Foundation about FMS (to find it, use the "search" function). Many employers are not familiar with this syndrome. Pain is subjective. You probably already know that people have a hard time understanding something that can not be seen like crutches or a body cast.

The key to living with FMS is learning to be grateful for what you can accomplish rather than what you are no longer able to manage. You must learn to pace yourself and respect what your body is telling you. Learn to say "no" and not feel guilty about it. Break tasks down into more managable increments and/or not be too proud to ask for help. As you have already discovered, FMS is variable on a daily basis. This makes it very difficult to plan. Knowledge is power. Read through the blue boxes on the lefthand side of this page and look at some of the old posts to see how people manage this syndrome. You are not alone. I hope that my comments are helpful to you. Take care and God Bless.


fibrofog - December 3

Welcome Rahiin! I am new here as well and can tell you that this is the most comprehensive site on the web for all your questions.

You are not being adequately treated for the fibro. Call the physician referral service so that you can be treated properly.

I once had a Doctor treat me badly. I left the office in tears (and I'm not a big crier). I wrote to everyone this ogre was connected with and let him have it! (He didn't believe fibro existed).

You have to be your own advocate and insist on the care that you deserve!

Take care


Rahiin - December 3

Thank you guys for the responses.

To Fantod- I've already done a number of things, that you have written, over the months. I have reported just a few of the worst doctors to their supervisors, the health liason, and/or the insurance company. Unfortuantly nothing was done at all, the people I talked to did not take me seriously. Thats another problem I have lol no one at all takes me seriously. So that whole ordeal just resulted in my doctors treating me even worse than before because they were ticked off that I reported them in the first place.

I have seen 3 different rheumotologists since I started showing the fibro symptoms a year and a half ago. One of them was one of the two doctors who disagnosed me. But none of them do anything for me either, they just pass me along to some other doctor. With no exaggeration here I have seen about 100 doctors in the past year and a half. Every 2 or 3 days I would have an appointment.

I am on Lyrica, and I have tried Cymbalta and Melatonin before and it did not have an effect on me after weeks so my doctors stopped those medications. Have not heard of Savella or Curamin before, I will ask about those.

I went to a therapist once because my doctor thought it was depression that I had, so I did the screening for it but it was negative so the therapist said that there was no use to come again.

Thank you for the advice and I will check them out to see if they work.


#1angelswife - December 3

Hi Rahlin,
I am new here also and I know what you're feeling. I just learned recently that I had fibromyalgia too and I can get really frustrated sometimes. I am slowly learning I need to be patient (believe me it's easier said than done.)
I use a lot of the natural stuff too. It takes longer sometimes because it needs to build up in your system. A good friend with fibro told me that when I was complaining one day that nothing worked.
I would dump both MDs and start fresh, even though it's frustrating. You need a doctor who will listen to you. I was lucky to get a good one this time around---it took him a year but he did finally diagnose it. My previous one would just laugh at me and tell me I was being dramatic, so I stopped trying to get help. Wish I hadn't wasted so many years before I found this one, but that's history now.
Good luck. You are in a good place here, with people who understand. That always makes it easier.


Rahiin - December 6

Thank you angelswife for the information.

My clinic will not let me switch doctors. What should I do about that? - February 14

I was prescribed cymbalta last June for fibromy 60mg a day My bloodwook just showed high liver enzymes so dr did a liver biopsy. Told me 2 get off cymbalta asap & would recheck blood n a mo. anyone had this happen? now what do I take? This is very scary 3 think this med has possible damaged my liver


January - February 14

panderson8 - hello. I had a very bad time with Cymbalta, taken along with many other drugs. I became severely ill. I didn't get test results, but I have med. background and began to suspect liver problems.

I quit every drug I possibly could and cleaned up my diet. (I no longer accept ANY prescription from ANY doctor without a lot of questions and doing my own research.) Take a list of ALL your meds and supplements to a good pharmacist (NOT a pharmacy clerk!), and ask him to go over it with you for drugs that affect your liver. If you take Tylenol (acetaminophen), stop. If you need help with pain, see your doctor. Withdrawal from Cymbalta makes you feel crazy sometimes, but it won't last, so hang in there!

Here's the GOOD NEWS: the liver is a resilient organ, and even if there is some damage, chances are good that your liver will heal itself. Google and read up on the liver, and find places that tell you how to support your liver and heal it. And check the info with your doctor, as not everything out there is "true!" I take an herb called Milk Thistle, but ask your doctor before you try anything!

I'm doing SO much better!. Stay in contact with your doctor and DON'T BE SCARED! Be thankful that you caught this early! Wishing you the best of luck!



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