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Just diagnosed by an unhelpful rheumatologist
8 Replies
christine68 - May 14

After getting an RA diagnosis from my GP, I was sent to a rheumatologist to confirm. He told me I don't have RA but fibro. He didn't seem very sympathetic and told me I need to unwind and get more sleep. That would help a lot. When I asked him if there could be dietary restrictions or suggestions. He said diet would not make a difference but everything I read everywhere else seems to tell me otherwise. It may also explain why i'm so uncomfortable after eating icecream or a bowl of cereal. Now what?


axxie - May 15

Hello christine68

Not unusual to have this kind of rheumy visit. Actually I'm not surprised. It's too bad, he didn't explain anything to you, about fibro and what you need to look out for, diet, supplements, etc.

First of all, I will begin by welcoming you to our discussion board. A place where you can ask a question or just hang out, give or receive advice. It helps all of us, to help ourselves.

The first thing you would like to do, is go to the left hand side and navigate the topics, you will then learn more about your symptoms and what is available for treatment. It will also help you when you see your gp or rheumy, when time comes that you need treatments. If you haven't started yet, or if your treatment is not working.

We encourage you to take part in our discussions, we are here to help each other and support one another.

Good luck to you and tell us more about yourself.


Sonja44 - May 15

I have a rheumatologist that isn't helpful...I've done most of my own research...with the help of my GP which has been most helpful. Sounds like you may be lactose intolerant. I became lactose intolerant within a month after my other CFS/FM symptoms started. It's a bummer but with some dietary changes and Lactaid...not horrible.

CFIDS of is a very helpful website and are current with the latest science on CFS/FM. Good luck my fibro friend.


JOEGIRL - May 16

Christine, I have the same problem as you everytime I eat my favorite dessert, icecream. Makes me so mad but sometimes I just can't resist and eat some anyway then I pay for it later.
I really don't understand how diet makes a difference with fibro?
I do know sleep does. If I don't sleep well I am not worth 2 cents the next day and hurt worse to.
Welcome and come back again. We are all learning from each other. Only people that live with this fibro really knows how we feel inside and out.


Fantod - May 16

Get another rheumy immediately. If that is the best your current rheumotologist can do than you certainly don't need him "looking" after your health. Go the to National Fibromyalgia Association website and ask them for a referral to a fibro-friendly rheumy in your area.

Fibromyalgia (FMS) is a disorder of the central nervous system. Essentially your pain receptors get stuck in the "on" position. The mechanism that causes the problem is not understood.

There are a number of other problems associated with FMS including unrefreshed sleep. If you are not getting deep sleep, your muscles can not repair themselves. This results in more pain; it is a vicious circle. You should be on medication to help you sleep properly. Amitriptyline is commonly prescribed for this issue.

For wide spread chronic pain there are a number of alternatives. Cymbalta is pretty effective. You have probably seen the ads for Lyrica on TV. It is specifically formulated for FMS. Lyrica has some unpleasant side effects. The most common complaint seems to be weight gain. There is also a new FMS drug on the market called Savilla.

I can make several suggestions regarding diet. It is not uncommon for people with FMS to have a host of digestive issues. You do need to determine if you are lactose intolerant. Stay away from ANYTHING that contains an artifical sweetner. Processed lunchmeat and deep-fried food as well. Any of these items will increase your overall pain level.

There are still plenty of doctors out there that think FMS is a figment of our imaginations. Your best defense is to be well educated on the subject. This website in particular, has some of the best information on the subject that I have read. You will have to learn to be your own best advocate. And,if and when you are up to the task, I'd like to suggest that you file a written complaint with the hospital system and your health insurance provider about your current rheumy and the lack of treatment. FMS is recognised by the Center for Disease Control and the National Arthitis Foundation. It is high time that your current rheumy recognises it too.

Take care and keep in touch.


christine68 - May 17

Thanks for your input. I do believe I will have to do my homework and educate myself about this. The rheumatologist did give me Trazodone to sleep better and told me to take at 6pm to relax. I hate it because it puts me in a fog shortly after and I can't get anything done, like helping my kids get ready for school the next day.

I had icecream last night after dinner and am paying the price today.


axxie - May 18

Hi christine68,

I also take trazadone, at first I was also in the same state. The dosage is probably 50mg, try taking your pill two hours later, that way you would have time to help the kids. The time factor is not written in stone. As a matter of fact, at the beginning I cut my dosage in half, and would still take it at 8p.m. and I would get the same affect as taking a whole pill. If you are unsure, call your doctor and ask them if you can half to begin.

I have been on trazadone for better part of 6months now, and I still take only half a pill, it gives me the same affect, although I'm able to wake up faster than previously.


Sonja44 - May 20

About diet effecting FM...some animal proteins, like caisen triggers inflammation. Dairy and meat may trigger flare ups in people with FM...and I'm one of them. Part of my management is being careful to limit or eliminate foods that may trigger more inflammation than I all ready have.

Caffeine and alcohol also can be culprits to triggering flares. If I drink alcohol (half a glass of a wine cooler) I can get severe muscle pain and feel sick to my stomach immediately...but it's inconsistent. For me, it's not worth the gamble.

FM can present a little differently in each person. Awareness to when your flare ups occur in relation to what you've eaten can help you figure out what tends to trigger your symptoms...which allows you to tweek your management of FM.

Hope that helped some. Take care.


canderson - May 26

You need to find a new doc asap. I have actually been lucky enough to find a Rhuemo doctor that only treats Fibromyalgia patients. He has been studying Fibro since 1981. I have been to 6 different doctors in the past 18 months and this the first connection to real help I have received. My GP is very sympathic but he just didn't know what else to do for me except give me more pain meds and anti-depressants.

My first visit to see him was like light and day, he spent 1 hour and 45 minutes talking with me and examining me. It as the first doctors visit where I didn't just fall apart in tears because I knew he understood and believed the pain is real.

I am so lucky to have found him and I did it on my own research.



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