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Positive ?
melpomene posted:
Is there a test that will show a positive diagnosis for FM? I had a diagnosis from a specialist due to the trigger point tests. I was told today from a nurse that she didn't think I had FM. She thought it could be from diet. I feel like I am running around in circles trying to figure out what is wrong and how to fix it. I'm not sure if it really matters anymore. I wanted to find out what I am dealing with so I could improve the quality of my life. I wanted to learn how to manage whatever I have so I could somehow enjoy my life. I don't want to give up and hurt myself and family by not doing anything to try and improve the situation. I wish I could get some real truth/answers.
Anon_10089 responded:
There have been reports about a blood test for FM but I don't think it's gone through whatever tests need to be recognized by the medical community. Plus, it's expensive and insurance doesn't cover it.

There has been a shift in diagnosing FM away from the trigger points, although doctors still often use it. What are your main symptoms? What were the nurse's reasons for doubting the diagnosis?

There have been people who thought they had FM and had many symptoms, then ended up having gluten intolerance. Once they go off gluten, most of their symptoms disappear. So if there is strong evidence it could be dietary, doing an elimination diet would be a good idea.

On the other hand, many "experts" will dispense free advice to us saying they have a friend who was cured after a certain diet, etc. So don't let someone push you around either. Eating healthy can ease some symptoms sometimes, but it will not cure the FM.

Personally, I don't really care if I have a name for what I deal with. All I know is that I have chronic pain, insomnia, and migraines. Those all need treatment, lifestyle adaptations, and family support. They can all be coped with and hopefully brought under better control, but they will never be completely cured.

This place is great for information and support. FM or any chronic illness can really play mind games with us and can make us question ourselves on every level. I hope you can figure some things out soon!

missist replied to Anon_10089's response:
My PT didn't think I had it either. I think neither a nurse or a PT is qualified to make that call. You can have fibro AND diet issues or AND arthritis which is what PT is treating.

I just feel like for me-- if I can get it under control calling it fibro-- then why not?

I was dx'd by a rheumy back in 88 or early 89 after a 3 year quest to find out what the heck was wrong. I'm not messing with that anymore.. I keep getting new problems as the years go by and I'm sure diet is in the mix too--but at this point?

what dif will it make?

melpomene replied to Anon_10089's response:
JR, Thank you for your response. I have been on a Gluten Free diet for a couple of years now. It has helped the stomach issues. It has not helped the pain and fatigue issues. I have Thyroid disease, depression, and anxiety. The symptoms for FM could also be symptoms from the other's also. I have worked on correcting the thyroid with medication. I have worked on the depression and anxiety with meds, therapy, diet, and exercise. I still have the pain and fatigue. I continue to search for answers. I had an APO gene test and from those results the nurse questions the diagnosis of FM. I really don't care what I have as far as a diagnosis. I want to know what I can do to improve. I hope to have a few years left and would like to be able to enjoy them. I have a family who I need to be well for and be able to enjoy time with them. I would like to go back to work at some point. My mother gave up she has RA. The quality of her life and her family's life was poor due to her health issues. I want more for myself and my family. I guess I am selfish! I won't give up!
melpomene replied to missist's response:
Mary, Thank you for the reply. I only wish I could find the answers so I can feel better. It seems like a small request. I am tired and just woke up. I have a full day ahead with my kids out of school. My husband has been deployed since June. I really hoped to have found the answers and been on the road to recovery by the time he returns. Unfortunately that has not happened . I am disappointed on top of everything else. I can't think of much else to try. I hope to get some suggestions here. I might just have to learn to live with pain and fatigue. I have done it for several years. It seems like it is getting worse with each day. I have to believe that I will find something to help. I can't imagine living like this much longer. Yuck!
Anon_10089 replied to melpomene's response:
Hello again-

Yes, FM is starting to be understand as a broad state of dysfunction that has co-conditions of digestive issues, hormonal issues (thyroid), etc.

You are doing a lot for your health! For pain, I have been telling everyone to check out the website :

A long-time poster here, Nancy, has been telling us all for years to get this woman's book (the website is hers). The website has a ton of information and is a good preview for the book. The author, Devin Starlanyl is an expert on trigger points. She explains that these can cause all kinds of issues, including pain, and that FM is a pain amplifier.

I have had a certain pain in my back since I was a kid. I get it whenever I walk, even a short distance. And the last couple of years, I have had almost chronic headaches and migraines. Well, I found a chart that shows a trigger point right where that spot is on my back and it also refers pain to the head--explaining the exact symptoms of my headaches!!

There are different ways to treat trigger points--Massage, injections, and acupuncture. I am doing acupuncture right now but I have a feeling I will need possibly injections in at least that one trigger point that I've had issues with for a long time.

Anyway, I didn't mean to talk about me. I am just cautiously excited to have another avenue to explore to ease some of my pain. Please take a look at the website. It has tons of resources and links.

Fatigue is a hard one and it seems like we haven't found a great treatment for that. I don't have tons of energy, but I think I struggle with pain more than fatigue. Also, I have had FM for most of my life, so maybe I have nothing to compare my energy levels to--I have never had high energy, even when I was a kid!

But I have read some studies about higher doses of niacin helping with fatigue. Also, make sure your sleep quality is as good as can be. I take melatonin and an herbal mix of sleep aids. I still wake up multiple times every night, but I think I sleep better in between.

You mention diet. Personally, I have to eat a diet higher in good fats and lower in sugar/carbs, even fruit sugar. Juice diets or green drink diets would probably put me in the hospital. I eat usually an avocado (or half) in the morning. By chance have you monitored or noticed how you feel a half hour or so after you eat? If you really feel worse or sluggish then, look at what you're eating.

You already pay attention to your diet, so that advice is probably unnecessary, but I thought I'd put it out there! Sometimes people are eating healthy, but wrong for their own body.

We're never pain free. But hopefully you can find some ways to live better!

melpomene replied to Anon_10089's response:
JR, I tried to post a reply twice and seem to delete it somehow. I just wanted to say thanks for the info and I will check out the website and book.
booch007 replied to melpomene's response:
Hey it's me again, Nancy...

If you are in the boat with all of us, you are here to stay. I am Trigger points and not FM. They say in literature all FM patients have trigger points but a trigger point patient doesn't always have FM.

I am not fibrofog or all ove fatigue. I get muscle fatigue at times and I look into hydration and rest for the trigger points that maybe in that muscle I am dealing with.

I have seen and been told that your approach to any diagnosis given is a key here.

Are you a fighter....a quitter....a victim....or a champion?

Your attitude to the obstacles lfe gives you, plays a role in the process of how much a condition takes you over. In my beginning it was right in front of me all the time. I talked about it, read about it, challenged it....complained about it and IT was always with me. As I learned more and won some battles I started to be able to put it behind. I also had planned to leave, to go in the woods behind my house and leave.....a plan in place.

I am so glad I didn't do it, I would have missed SO MUCH of my life. I was in a black place, looking at the path in total and feeling it would never be better. I am better for sure and did great for a bit. I am in a challebged place right now and I have to figure it out......this is the hardest thing I have had to deal with. It is 24/7 and it is always waiting fo me when I awake. I just have learned to get him behind me...he can follow me as I get through the day. I try not to let him in front of me and be the focus in the day......(he , our too big and ugly to be IN FRONT of me).

Years back I said, I am draggin the dragon....and then I changed it to "Learning to dance with the dragon". Perspective, life is perspective.

In other words, my meds and doing what I know I can do now and planning the day out made all the difference, as well as I took my DH to the doctors and he saw the issues with the TrP injections and saw the sites that were in trouble......he then became my champion and NO ONE doubts me. It is now real to him and all.

Good luck, please make sure you don't hurt yourself. Lets say that today is really the worst you will be and it will get better from now. Arm yourself with the tools you need.

As a nurse I will say that dehydration for the body presents as symptoms not so clear. I myself was so dehydrated and it takes a couple of months to get the body rehydrated as your kidney will flush excess out day to day, keeping a small amount each time. Fatigue is big with dehydration, poor muscles are not able to flush waste products and it just gets so complicated. Our bodies are resilient and can do so much for us.

Good luck, Nancy B
melpomene replied to booch007's response:
Nancy, Thank you for your reply. I guess I play the victim/fighter role. I hate being a victim so I fight. I fight hard.

I like your comment about dancing with the dragon. I will try to remind myself of this.

I do believe if you can change your thought process it helps a bit.

Thanks again.

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