Unsure this is Fibro...needing reassurance

Hello to everyone,

This is my first time here and I don't know my way around very well. Have had CFS for many years, but have developed Fibro symptoms over the past 2 years and they are progressive. I have seen so many doctors and they've come up with nothing definitive. With all of the cognitive changes and the progressive nature of my symptoms, I am afraid that they are missing something. Would like to hear from some of you that have memory issues, mental slowness and concentration problems, etc. to know what that experience is like for you. How severe is your "brain fog" and in what way does it manifest itself?

I am torn between the Western medicine doctors and the holistic doctors I have seen. They disagree with one another and won't work together. Amazingly I have yet to see a rheumatologist. I guess that's because the pain is relatively new for me. The exhaustion, muscle weakness and mental changes have all been around for at least 2 years. How do you get to the point where you can just accept that this is Fibro and that they aren't missing something that needs to be treated before it becomes untreatable? My anxiety level is high with the lack of answers and no reassurance that I won't just keep getting worse.

Also, I have been on so many supplements that I can't even begin to name them or to keep track. Have others found them to be helpful or detrimental? I wonder if they are part of the reason that I continue to develop more and more symptoms.

My newest symptom is that all of my joints pop and crack whenever I move and this came on fairly quickly. I sound like I am quite elderly. Is this a common symptom?

Thanks for listening. May you each find the support and encouragement to face the daily challenge of living with this difficult syndrome.

Hi Penn

I can understand your feelings and confusion. It is not always easy to know what is what .

As for me , it did take some time but I have found doctors that I trust and respect and feel confident in their expertise and that I feel comfortable with. I am happy with my medical office and my neurologist . They are very familiar with cfs, fm and the chronic pain illnesses.

I do think if you get confused or unsure as I had and still do at times it is best to speak up ,question , discuss and get testing if need be . After all people with cfs/fm can get other illnesses just as anyone can and we certainly don’t want to miss anything that may need treating . For me it was very important to have medical people who 'believed ’ me enough to know that I am , truly and in fact ill and would listen to me and research anything if it was necessary to help me and treat me. So I guess I am saying that if you are not comfortable and sure of your medical people to seek others . When I was doing my search of any medical and specialist people my first question to the secretary would be,'does this doctor understand , familiar with and treat such and such ’ then I ask the same thing to the doctor when I meet them . This will determine how I think they can help me and if I will make another appointment .i once had a doctor who said he didn’t know much about cfids but he would research it so that when I came back he would see how he could help me . He was true to his word and he was my medical doctor for twenty years . Gosh I think I wrote you a novel . Lol

I hope I have helped you in some way and wish you all the best .



Ps I like to incorporate eastern and western medicine taking the best of both ! Lol

I went thru 3 Neurologists before I found 1 that looked at ALL of my Med records & told me that my symptoms matched 15 possibilities & then started testing me. They were all negative & the only 1 left was a $1500 co-pay, for a DNA test & since THAT was genetic the only thing she could do was treat the symptoms, (Yippy Skippy).

My Primary sent me to a Rheumatologist & I was diagnosed w/Fibro which was 3, 4, 5? yrs ago. I also have a bit of arthritis, gout & osteo 'ritis. (Every morning my whole body sounds like a bowl of rice cereal when milk is added.)

One of my sisters gave me a medicinal herbology book. I use some of the herbs, roots, fruits & vegies it recommends, they help me, but w/ALL of us, some items work for one but not the other. As long as your Primary knows what you are taking to make certain that the herbal/supplements won't interact w/your Meds.


I went through many doctors before I found one or two that I like. But being completely honest, other than the diagnosis, the doctors really don’t do much at this point. I’ve decided to steer clear of prescription medication so there really is no need to see a doctor specifically for my fibro unless I need blood testing or something new comes up.

One of the most frustrating things about fibro is that now that I have it, doctors blame it for everything. So I do have to be an advocate for myself and push for further testing or other possibilities.

My journey to find a name for my problem took over 7 years and many doctors and lots of crying. By the time I got the diagnosis I was just happy to have a name for it. But sometimes I do feel like, “what if they’re missing something?” But honestly, I have enough pain and anxiety and life going on to let that consume me. Make sure you’ve had all the basic blood testing and maybe an MRI. I don’t take much for supplements, just vitamin D and a multivitamin.

My symptoms are: widespread muscle and joint pain (and my joints pop and crack too), frequent headaches, restless sleep, fatigue, IBS, RLS, difficulty concentrating, moodiness and a general feeling of fogginess. The mental symptoms are much worse when I’m tired.

The things that have worked best for me are: eating less processed food, staying moving (even just walking or gentle stretching on my really bad days), trying to relax, warm baths (with Epsom salt and aroma oils), and expressing myself on healthy ways. I find that when I hold in my frustrations my symptoms get worse. Also I have times of the year that are wise and weather that brings symptoms on. Raining and snowing are big ones and when it gets really humid.

It’s frustrating for sure!!! Hope you find some relief in this support group!

Hi Penn,

Fibro fog for me is like my brain hits a wall. I will be at work reading emails and although I'm reading the words on the screen the information just isn't sinking in. I'm usually sharp...until I'm not. My fog isn't constant but when it shows up it is obvious that it is more than just a bad night of sleep.

I think a Fibro diagnosis is a double edged sword. On one hand you now have something to target and treat but on the other hand many docs either don't understand it or will use it to explain away all symptoms. This is true of either eastern or western docs. That being said, regardless of whether you go east or west for treatment (or somewhere in between which gets my vote) you HAVE to find one that understands FM. My rheumatologist and pain management physicians told me they didn't want to put "fibromyalgia" on my chart because although they knew I had it they knew other providers would either attribute all future complaints to the diagnosis or I may be denied effective treatment or medical coverage. I had been told by my primary care office that there was no reason for my symptoms and maybe I was just depressed. They also said maybe we'll never know why I'm having all these symptoms and I should learn to be okay with that. They also treated me like I was on trial for being in pain. When the rheumatologist and pain management physicians finally independently diagnosed me I was just glad that someone finally believed me and started treatment. For now, the Lyrica is helping so I feel like I'm on the right track.

Supplements: I take Vit D 1000 units daily (I was deficient, level=17 two years ago and latest is 66), Vit B12 500mcg daily, B-Complex daily. None of them are a magic bullet but they won't hurt.

First thing in the morning I pop and crack too. For about 3 months this summer I could barely will myself out of bed in the morning. I felt like a 70 year old woman. I would shuffle to the bathroom (the arches of my feet were sore and all my joints were sore) and get in the shower just to loosen up the muscles in my neck and back. I've since started a routine where I get up and use a warming blanket while drinking my tea to get me moving. From what I've read, most people with FM have difficulty in the morning and evening with the best time being late morning and early afternoon.

I am fortunate in that I am still very functional. I work and have small children at home. I also workout regularly but I know not everyone can do this. The difficult issue is that my experience will be different from yours and the next person and the next person. My symptoms fluctuate from one day to the next, one month to the next and over the past 10 years from one year to the next. This is why I've taken so long to be diagnosed because I'll have a decent month and think, "no. I'm ok" then have one where I can barely function and think, "oh gosh, will I ever be able to function again" then "no. I'm ok".

I guess in the end it is very difficult but I think that support from a group like this will help reinforce your confidence in the diagnosis.

Hang in there!

Yep…I agree with everyone. Mental fog is horrible…today it took me an hour to write a treatment note because my fog was so crazy and I was in excruciating pain. As mental health therapist one would think I would have all the answers, but I don’t. I just know that we all have symptoms that vary. Sometimes what helps me is I lay on my back as painful as it is and I flex and point my legs and stretching them in circles over my head. Even it sounds horrible out helps me sometimes. Progressive muscle relaxation is helpful a well. Take care of yourself!!
~ Bonnie

I am glad to hear that some of you have found good doctors. I am in that quest right now. Please share your good doctors under the "Doctor Recommendations" thread, so we will all have more options open to us. Do any of them happen to be near the Houston area by the way? Thanks for the support - United we stand, divided we are alone ;-) Marla Kay.