I’m lost

annamariebell

New member
Joined
Sep 2, 2022
Messages
5
I am so very lost at the moment and feel totally alone. Trying not to cry as I’m talking to my iPad talking about it seems to make me feel even worse. I’ve just done the test and it says that I don’t have fibromyalgia. Which makes me feel even worse. I just don’t know what to do next I been told by the Musco skeletal team that I do have fibromyalgia. Some days the pain is manageable on other days I don’t even wanna get out of bed. My children keep me going when I just wanna give up I’m really tired of the constant aches and pains I’m just looking for support and people who understand. My right arm is in constant state of pain some days worse than another’s. The back of my neck is aches my left hand pins and needles all the time thought, it was due to carpal tunnel but I had a surgery for that. It’s a dizzy moment when I’m in the shower that scare me, i’m trying to limit what I do when I do it. If I do too much pain worse, but when you’ve got kids you don’t really have a choice of what you can and can’t do I suppose I’m just asking where do I go from here
 

sunkacola

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2,319
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DX FIBRO
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Hi annamariebell,

Welcome to the forum. this is a place where people try their best to help each other, give support, and answer questions as best we can. We ca give advice too, and often do, but you need to remember that we all know that what works for one person may not work for another person and the most important thing is for you to take charge of your own heath and work on it yourself. In that, we can help with encouragement and support. Know that even though it feels that way you are not aline, s there are many thousands of us struggling with and living with and dealing with fibromyalgia.

Here is a post that will get you started on answering your questions "where do I go from here". Please read it and start trying out whatever you can among those suggestions, and ask any questions you may have.

Keep in mind also: tests really don't mean much in that they are only a sort of guide, not something definitive like a blood test that can prove you have or don't have a virus. Passing or not passing a test on paper doesn't determine whether or not you have fibro. If you have widespread pain, it has been consistent over the course of many months or longer, you have been tested for other things that could be causing it and come up without answers, you probably have fibromyalgia.

Either way, doing the things in this post may go a long way to help you feel better.

 

fimi

Senior member
Joined
Apr 12, 2022
Messages
233
Reason
DX FIBRO
Country
UK
Hi annamariebell and welcome!

I hope the forum brings you help and comfort in all you are going through.
Please keep chatting, as being here can really help - it doesn't take away the pain, but you'll get lots of advice on how to manage fibro to lead a better life. It also helps with your mental health too which has been a major plus for me personally.

Whether you have fibro or not, you're in a great place for support. :)

Keep strong :)
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
493
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Hi annamariebell, and welcome. You have definitely found the right place for support, empathy, and plenty of great info, too.

where do you go from here?
First step is to take a deep breath and let it out slowly - realize you are not alone and there are plenty of us here in the same kind of boat that are willing to listen, and offer support.
My right arm is in constant state of pain, some days worse than another. The back of my neck is aches, my left hand pins and needles all the time thought, it was due to carpal tunnel but I had a surgery for that. It’s a dizzy moment when I’m in the shower that scare me,
Curious, have you had any x-rays or MRI of your neck region?? because that cluster of symptoms right there suggest problems that are starting in the neck. Dizziness, pain down the arms and along the shoulders, neck pain... all indicate a problem in the cervical spine. (ask me how i know, lol)... neck problems can actually cause hearing and vision issues as well...

Carpal Tunnel Syndrome pins & needles are very specific in location - thumb, index finger & middle finger, with some in the palm under those fingers. The wrist itself can ache, too, when it is bad.. If you are feeling it along the outside edge of your hand, pinky and/or ring finger, it is not CTS - completely different nerve.
You should have had some kind of nerve conduction testing before surgery to verify you did actually have CTS, and yes, you can have CTS, and have other problems as well. one is not mutually exclusive to the other.

now, none of the above says you dont have fibro, because you can have both (again, ask me how i know, lol) but I think that it would be wise to look into possible neck problems a bit more.
And dont let the musculoskeletal team tell you it is just the fibro causing all these problems.. be persistent and get a 2nd opinion if necessary. Doctors are not gods and sometimes we patients have to take charge to get answers to our questions.
 

annamariebell

New member
Joined
Sep 2, 2022
Messages
5
Thanks, i went private for my carpel tunnel had went through a lot of tests and also saw the private rheumatologist and he did numerous tests. I’ve had that many blood tests over the last few years. I think the pain from the carpel tunnel was hiding some of my other issues.
Thank you all for your messages and info, will read through everything. I think cause I’ve changed antidepressants it’s probably having more of an affect on me than I thought.
I had to get off sertraline
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
345
I am so very lost at the moment and feel totally alone. Trying not to cry as I’m talking to my iPad talking about it seems to make me feel even worse. I’ve just done the test and it says that I don’t have fibromyalgia.
I am sad that you don't know what label to give your symptoms yet. On a positive note, the belief that there is a test to RULE OUT fibromyalgia doesn't make sense regardless of who claims it does (doctors included). Fibromyalgia is the label given to people like you who have widespread pain with no other known cause. There is so little known about what causes our widespread pain that they sort of just lump us all together. In fact, they had to update the fibro "diagnosis criteria" by removing a requirement that someone has tender points. Chances are high that there are different underlying physiological conditions causing our symptoms. Perhaps you have a rare underlying physiological condition and thats why the fibro "test" doesn't include your symptoms.
Which makes me feel even worse. I just don’t know what to do next I been told by the Musco skeletal team that I do have fibromyalgia. Some days the pain is manageable on other days I don’t even wanna get out of bed. My children keep me going when I just wanna give up I’m really tired of the constant aches and pains I’m just looking for support and people who understand. My right arm is in constant state of pain some days worse than another’s. The back of my neck is aches my left hand pins and needles all the time thought, it was due to carpal tunnel but I had a surgery for that. It’s a dizzy moment when I’m in the shower that scare me, i’m trying to limit what I do when I do it. If I do too much pain worse, but when you’ve got kids you don’t really have a choice of what you can and can’t do I suppose I’m just asking where do I go from here
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I’ve just done the test and it says that I don’t have fibromyalgia.
The test on our main page is based on the 2016 ACR criteria, which I've attached: I'm curious and perhaps it'd help you if you had a look at these and try to figure out where your symptoms don't fit....
 

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sweetkamie20

Senior member
Joined
May 16, 2022
Messages
345
I am sad that you don't know what label to give your symptoms yet. On a positive note, the belief that there is a test to RULE OUT fibromyalgia doesn't make sense regardless of who claims it does (doctors included). Fibromyalgia is the label given to people like you who have widespread pain with no other known cause. There is so little known about what causes our widespread pain that they sort of just lump us all together. In fact, they had to update the fibro "diagnosis criteria" by removing a requirement that someone has tender points. Chances are high that there are different underlying physiological conditions causing our symptoms. Perhaps you have a rare underlying physiological condition and thats why the fibro "test" doesn't include your symptoms.
@annamariebell It looks like part of my reply didnt post :(. I just wanted to let you know you have found a good place to find support. Personally, I am perfectly comfortable considering you to have fibromyalgia and hope you don't mind if I do consider you that way.

Sunkacolas newcomer post is a great place to look for where to start your journey managing fibro. You'll probably find a couple things on there that you are able to implement. Adapting activity as much as possible to account for your limitations is a good investment in your future. Even if you can reduce your pain by just 10%, or reduce how often it occurs just 1 day a week, it could make an extremely high difference in your emotional well-being. Continue to try to make things safe for yourself.

And remember, your kids are learning from you what to expect of themselves. If you are requiring of yourself something that is non-essential for their well-being but it's costing you your well-being, ther are likely going to absorb that model personally. They then become parents that drive themselves into the ground. I see parents that insist on giving their kids a "normal" life involving relentless social opportunities like multiple extracurricular activities do it to their personal detriment.

We have to stop believing that kids need us to suffer so they can do all the things other kids do. What kids need most for a happy future is a parent that has a good relationship with themself, a parent that role models how to manage difficult circumstances in a way that others' non-essential needs don't drive them into the ground. They need a parent who models a perspective that promotes minimizing unnecessary stress and maximizing happiness through perspective. I hope that doesn't come across wrong. I've just done hundreds of family assessments and parents get caught up in the non-essentials missing the essentials. If you have to choose between giving your kids things/experiences and giving them a healthy perspective, choose the perspective ❤️
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
345
Sorry - one last thing I failed to include - I am not assuming you are sacrificing yourself unnecessarily. I know you are aware that caring for yourself is important. That part about parenting is really just a message I wish every parent received and an encouragement to parents when they are drawn towards doing something non-essential out of guilt or a feeling that they are failing as a parent if they don't do something. Kids will inevitably face hard times as adults and infusing them with perspectives they need for the future will do more than infusing non-essential things. Just something I hope every parent remembers when they feel like they are failures if they say no to something...
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
493
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
I think the pain from the carpel tunnel was hiding some of my other issues.
very possible.
I had CTS surgery on my right hand in 2013 - before the fibro became the "elephant in the room". Was going to school at the time and scheduled the surgery for the winter break... semester ended on Dec 20, had the surgery done on Dec 21, and by the start of the next semester (Jan 12 i think) i was able to hold a pencil again, lol

I think cause I’ve changed antidepressants it’s probably having more of an affect on me than I thought.
I had to get off sertraline
This is also very likely, and i hope things settle down for you soon
I am coming off of sertraline myself, and it kinda sucks.

Hang in there, and know you are not alone, not by a long shot.

as for the "test" posted on this site... I have heard one Fibro specialist mention that he thinks of it as different degrees of Fibro, and it can change, even within the same person. so just because today the "test" says one thing, next week, or next month, it could be completely different. So regardless of the score.. wide spread pain lasting longer than 3 months, with no other cause found says Fibro to me
 

annamariebell

New member
Joined
Sep 2, 2022
Messages
5
very possible.
I had CTS surgery on my right hand in 2013 - before the fibro became the "elephant in the room". Was going to school at the time and scheduled the surgery for the winter break... semester ended on Dec 20, had the surgery done on Dec 21, and by the start of the next semester (Jan 12 i think) i was able to hold a pencil again, lol


This is also very likely, and i hope things settle down for you soon
I am coming off of sertraline myself, and it kinda sucks.

Hang in there, and know you are not alone, not by a long shot.

as for the "test" posted on this site... I have heard one Fibro specialist mention that he thinks of it as different degrees of Fibro, and it can change, even within the same person. so just because today the "test" says one thing, next week, or next month, it could be completely different. So regardless of the score.. wide spread pain lasting longer than 3 months, with no other cause found says Fibro to me
thanks the support here is amazing, so glad I joined. I am starting second nature next week referred by nhs so that should help with weight and healthy eating, and am having massages with a lady in Hawarden and she is amazing. I just need to get my head in the right mind set,
 

JayCS

Legendary member
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Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
If you have widespread pain, it has been consistent over the course of many months or longer, you have been tested for other things that could be causing it and come up without answers, you probably have fibromyalgia.
So regardless of the score.. wide spread pain lasting longer than 3 months, with no other cause found says Fibro to me
try to figure out where your symptoms don't fit....
Hmm, I sort of agree, because what else is there? Praps just calling it an 'invisible chronic pain condition, not otherwise specified'. On the other hand the 6 additional symptoms of the "Symptom Severity Score" part are very characteristic for us, so unusual for them to be missing.... But what needs to be clear is that these have only been chosen out of a whole load of possible symptoms, because they are most characteristic, and so the diagnosis can be arrived at quicker. If someone has a lot of other symptoms not quite so characteristic, that will make up for these.
 

annamariebell

New member
Joined
Sep 2, 2022
Messages
5
My hubby (mum has fibromyalgia) couldn’t understand why test came back as a no. So made me re do it and I have read the questions wrong. I had read them as life threatening. So we filled it out again and it’s saying I do now. That’s what I get for not reading it properly (I should have thought about that. Sometimes I can read things 3/4 times b4 they sink in
 
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