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Good Fibro Docs in NYC/Long Island Area?
3 Replies
starlitdragon - July 18

I just signed up to these boards today, and I'm not honestly sure how to do a search, so I apologize if something like this has already been asked.

Every Rheumatologist I go to claims to treat FMS, but once I get into see them, suddenly they 'don't really know much about the illness, so we'll throw you on some meds. Oh yea, and excise more'. And of course, there is no talking to my PCP, who blames everything that's wrong with me on my FMS. I could walk in with a broken arm - don't worry, that's your Fibromyalgia! Grr.

I really need to see someone that doesn't make me feel worse than I already do. I was curious if anyone could recommend someone in the NYC or Long Island area that maybe they've used or know of that actually specializes in this. If I have to go to one more Rheumatologist who tries to throw me on Lyrica, I may scream.

Thank you for any help you can provide!


Fantod - July 18

Hello Starlitdragon - Welcome!

You can go to the National Fibromyalgia Association website and register. Then you can see a list of healthcare providers in your state that treat fibromyalgia (FMS). You can also call your local hospital physician referral service and see if they can recommend a rheumotologist and/or pain specialist that has an interest in Fibromyalgia. I have both a rheumotologist and a pain specialist.

Your comments about being "thrown on some meds" concerns me. I get the impression that you are resistant to that idea. I'm going to give you a brief overview of FMS and possible treatment options.

Fibromyalgia Syndrome is a disorder of the central nervous system. Essentially, your pain receptors are stuck in the on position. The mechanism that causes this is not understood. FMS can be managed but there is no cure at this time. FMS is recoginized by the National Arthitis Foundation and the Center for Disease Control.

FMS causes a number of disruptions in the body which is why being treated with prescription medication is so important. Only certain classes of prescribed medication are effective. They are usually anti-depressants used in low doses.
Once a chronic pain cycle is established it is very hard to bring it under control. The longer the pain cycle goes on, the more unmanagable it becomes leading to a cascade of other associated symptoms.

One of the most damaging aspects of FMS is the inability to get restorative sleep. FMS interrupts the deep sleep cycle which your muscles need to repair themselves from the days activities. No restorative sleep means higher pain levels. This becomes a vicious circle especially without proper medication.

There are a number of options to treat FMS. For sleep, Amitriptyline is usually prescribed. For FMS in general, Lyrica, Savella and Cymbalta are all treatment options.

Lyrica is not an antidepressant. It is specifically formulated to treat FMS. The most common complaint is rapid wieght gain. I can understand why that would not be your first choice.

Savella is new to the US market. It has been used in Europe for about 20 years. Quite a few people on this board are using it and report good results.

Cymbalta is an antidepressant that treats both the depression which usually accompanies FMS as well as chronic pain. I have used Cymbalata for a couple of years and it is pretty effective. Quite a few people on this board also use it.

The bottom line is that you will require some medication to manage this syndrome. This is very comprehensive site. Take some time to read the information in the blue boxes on the lefthand side of this page. With FMS you have to be your own best advocate. There are still a lot of doctors out there who think it is a figment of out collective imaginations.

And, as for exercise you should consider Yoga, walking, or a swim class for arthitics. Exercise on its own will not cure FMS.

Take care and let us know how you are doing.


starlitdragon - July 18

Thank you for your reply,

I was hoping that someone here could recommend someone for me for the mere comfort that I know I wouldn't be going to a doctor who 'claims' to treat FMS, but in the end doesn't know much about it.

I've been diagnosed since I was 15, so it's been about 13 years, I understand what FMS is and how it is commonly treated. I thank you for your reply and concern. My problem is that my body doesn't take to medication very well, so that is not my answer. I've been on Lyrica and Amitriptyline - and received every side effect possible. I don't want to be a pin cushion for drug use, I want some different possibilities other than take this drug and call me in the morning.

I do work out, I do it every day (minus sundays ^^), but every doc I've been too thinks that is also the only answer. I was hoping to find someone that could understand me as an individual and also the FMS that is unique to me. Or at least a doctor that would work with me and whatever RX they prescribe. Rather than the treatment I've been getting, which isn't very caring at all.

I will check out that website, but if anyone else can recommend a doctor for me in this area, I would be more than grateful.


Fantod - July 18

I am also very sensitive to medication and I use a mix of holistic and conventional medicine for treatment. Have you considered looking for a functional medicine specialist in your area? They are usually a DO or MD with a holistic background. They may or may not take insurance. I just found one that does. I also work with a nutritonist.

I can totally understand your medication concerns. I just tried Savella and it was a disaster. All medication is like poison as far as I am concerned.

The other option would be to have a compound pharmacy reformulate the medication to see if you can tolerate it in a dose lower than the cookie cutter version that is supposed to work for everyone (except me and you). There are compound pharmacies every where. If one is not convenient to your home the script can be faxed, made up and mailed to your home.

Good luck - I hope you find a doctor who will listen and help you. Take care.



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