Confused & puzzled

[judy2learn]

Hi, everyone. I'm new here and feeling uncertain, to say the least. In a nutshell, I'm in my late 60's and have been experiencing pain in my neck, shoulders, arms, back, and hips for 20 yrs. I saw a chiropractor for many "adjustments" in 15 of those 20 yrs but the pain never really left and always flared again after a short period of time (usually within hours). When he retired in 2020, my PCP referred me to a new chiropractor who is great. A year ago, he said, "You need to see your PCP. I believe you have fibromyalgia." That stopped me in my tracks.

I spent time on the computer that evening, researching fibro, and began thinking back over the pains I have been experiencing. I started to agree with him. I addition to the pains the chiropractor had been treating, within a period of two hours in Sept 2019, I went from walking fine to unable to walk without a walker. First my left knee hurt constantly, then eventually my right knee joined the club. I saw two orthopedic specialists who could not tell me why my knees hurt. They put me on tramadol, which I took every six hours just to be able to function.

I retired the end of 2020. Eventually, the pain in my knees started to ease up so I am now able to walk short distances without using my walker. I keep close track of how often I take tramadol. Some days are bad and I take a pill every 6-7 hrs. Conversely, I sometimes take a pill only every other day. On rare occasions, I don't take a pain pill for 3-4 days. I usually take on average one pill each day, usually at night which is when I seem to hurt the most. My sleep pattern is horrible. Once or twice a week, I'll actually sleep 6-8 hrs in a night. The rest of the time, I average 3-4 hrs per night. As a result, I am always tired, sometimes have difficulty thinking clearly, etc. My husband is VERY supportive, understands my pain because of orthopedic injuries he has dealt with all his life, and I couldn't deal with this without him.

I took the free fibromyalgia test on the website, and it says I have fibro. I have not seen any doctors other than my PCP because I can't afford to. We live on our social security, and after paying our monthly bills, there isn't much left for gas and groceries, let alone doctor copays.

Can my PCP test for everything that I should have tested to eliminate everything else and conclude with fibro? If not, then I'm stuck. I can't afford to see specialists and have a myriad of tests run. So what do I do beyond taking the fibro test on this website and seeing my PCP? While I experience pain, it is not usually constant. My knee pain was constant, but when that eased off, my bodily pain is now more infrequent. I always react to too hot or too cold. I can almost guarantee that extreme temperatures will make me hurt. I wake in the night and if one arm is out from under the covers (it's March in the northwest and cold at night), my upper arm and shoulder will be extremely painful. Sometimes I'll wake in the night and experience pain just moving my arm under the covers, and once the pain starts, it does not want to stop.

Do I have fibromyalgia? The chiropractor who saw me last February has a PhD in the field and has other patients with fibro. I trust him. When I did go to see my PCP, I first completed a very long questionnaire (several pages) about my pain levels, and she agreed with the chiropractor. Do I accept that as my diagnosis and go forward? I'm uncertain what to do.

I know this is a very long post but I'm a detail-oriented kind of person and needed to explain what's been happening that has led to my confusion. And I'm quite sure there are other symptoms that I haven't mentioned because I can't think of them right now, given that it's midnight, I'm very tired, but I can't sleep (again). Any ideas, suggestions, input, etc. that anyone has will be greatly appreciated. Thanks for "listening".

 

[JayCS]

I took the free fibromyalgia test on the website, and it says I have fibro.

Yeah, that's a fairly good indication, you might want to check the 2016 ACR criteria on which they are based to feel more certain.

I have not seen any doctors other than my PCP because I can't afford to. ... Can my PCP test for everything that I should have tested to eliminate everything else and conclude with fibro? If not, then I'm stuck.

Depends on the PCP, some do quite a lot. Typical referrals would be rheumatology & neurology. It's also just the question where to draw the line - where docs, insurances and our own pockets say more isn't necessary. You seem to have been tested for the most likely things. I got absolutely everything checked for, but that didn't change too much, cos whether fibro or something additional, the docs couldn't help, all the physios only partly only certain ones.

While I experience pain, it is not usually constant.

"Knowing" it is fibromyalgia doesn't help that much anyway, esp. in your situation. So you could just treat it as that, using all the many ideas on this forum and on the web what to do to improve each symptom, identifying your triggers etc. In your case your knee pain seems a trigger for the rest of the bodily pain. Or it's one thing comes to another. So finding new ways to tackle it. My knee pain while walking I improved by turning my leg outside then inside with every step. Not that that will help you, just there's lots to try. I always get help from youtube physios for each musculosketal symptom.
If the pain isn't constant that's a brilliant starting point for finding triggers (when is it more, when less, what happened) and keeping it down in time.

I always react to too hot or too cold. I can almost guarantee that extreme temperatures will make me hurt. I wake in the night and if one arm is out from under the covers (it's March in the northwest and cold at night), my upper arm and shoulder will be extremely painful.
Sometimes I'll wake in the night and experience pain just moving my arm under the covers, and once the pain starts, it does not want to stop.

Yes, this would again be typical for fibro - but doesn't fully exclude other things, of course.
What may help is to become more aware of when it's getting too much and react in time, always testing and then having tools to counter-act. Like I use hot and cold showers, make sure I'm always warm with layers, hot water bottle, sun and wind shade. I've trained myself to lie in certain twist-stretched positions, I have a warm straw mattress, my upper duvet goes broad over me, so it'll hardly happen that one arm is out. But if it were I'd do everything to gt it back to normal as quick as I can. If I get cold thru and thru from not preventing in time that can take a day or longer to recover.
But I don't just avoid / prevent cold & wind and heat & sun, I also train my body, by slowly getting used to them, using alternating showers etc. Works for everything except wind.
Same with pain, I use various stretches, acupressure points and massager in the daytime to see what works best, often a combination, so I can also use them at night. When I couldn't sleep for pain, I didn't, I made sure I got the pain down enough first or was tired enough anyway.

Do I accept that as my diagnosis and go forward? I'm uncertain what to do.

The ACR criteria open up the option to accept the diagnosis and still continue looking for further diagnoses that will help, whilst "going forward" by finding things that help each symptom, whatever it may be.
They say it can well be fibromyalgia and something else.

I know this is a very long post but I'm a detail-oriented kind of person

That's me, too, as you are probably gathering...

I'm very tired, but I can't sleep (again).

Tons of things that can help with that, too. May be a major priority for quality of life, in spite of everything else that's going on. But night pain will be one of the many triggers that cause our insomnia, so to me is more important than day pain to some extent.

 

[sunkacola]

hello @judy2learn , and welcome to the forum.

Long posts are fine here, and you are welcome to be as detailed as you like in your posts.
One thing, though. Many of us, including myself, have trouble reading a long post if it is not broken up into shorter paragraphs. I have edited your post to put in paragraph breaks so that others can read your post more easily, and am letting you know so that you can do this in the future. Thanks.

JayCS above gives good answers to some of your questions. I especially agree with the following:

The ACR criteria open up the option to accept the diagnosis and still continue looking for further diagnoses that will help, whilst "going forward" by finding things that help each symptom, whatever it may be.
They say it can well be fibromyalgia and something else.

...........And I recommend that you start now to do everything you can to treat this as if it were fibromyalgia, while being open always to finding out other possible causes for your symptoms, and doing what investigating you can into that. Many general doctors can test for most of the things that you need to eliminate or investigate.

I wrote a post of suggestions for how to go about doing some experimentation o your own to discover what might make your pain and other symptoms worse, or better, and I recommend you have a good look at that and start working your way through the various things and any others you may think of.

And feel free to post here (as long a post as you want), and to come here for support. We cannot tell you if you have fibromyalgia or not; no one here is a doctor. But we can tell you what helps us, what doesn't, and encourage you as you explore various possibilities.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[judy2learn]

Thank you, Thank you, Thank you to both JayCS and Sunkacola!! I know that the symptoms of this disease make people think they're crazy until they get a diagnosis, but I felt crazy AFTER my diagnosis. I was afraid that people would read my description of symptoms and say I DON'T have fibro, that I'm just trying to get sympathy. I understand that that kind of response (sarcasm, etc) is not what I can expect on this forum. It's just childhood voices playing in my head. I'm so relieved, I'm near tears. It's almost like I can breathe again.

I will be sure to break up my postings into shorter paragraphs. I LOVE to read and fortunately, my fibro has not affected the ability to do that. I will also look up the 2016 ACR Criteria test that JayCS mentioned. Right now, my wonderful husband has breakfast waiting for me so I'm going to go enjoy it. Thanks again for your support!!

 

[JayCS]

2016 ACR Criteria test

I actually linked to it above, as I've uploaded them on this forum, and will link again, so you don't have to research them: click here.