Undiagnosed and tired of being tired.

femfatigued

Member
Joined
May 9, 2021
Messages
25
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
@Shy1shy1 From everything I have read, it seems very plausible that I could have fibro. Everything else has been ruled out. The last rheumatologist I went to was 6 years ago and she had the personality of a wet mop. She used the tender point method to determine that I did NOT have fibro, but I think that's BS. Supposedly, they don't even use this method anymore. My appt. with her is in a month and I hope she does not use that method any longer because I've read some people don't even have the tender points. I also have tender places on my elbow, knees, hip and lower back that when you press on them they are sore like a bruise. I have not found anything for the fatigue yet. Since I suffer from depression also, it makes everything twice as bad and is hard to get out of bed. I think CFS is very similar to fibro, but I haven't been diagnosed with either. I usually will get tired of going to dr's and give it a few years rest without pursuing a diagnosis, but eventually when it's bothering me really bad, I will pursue it again and never get a diagnosis. It's so frustrating to know something is wrong and no one can tell you why.
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
288
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Where’ve you been femfatiged you’ve not been on for ages and ages?
 

femfatigued

Member
Joined
May 9, 2021
Messages
25
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
@Auriel Hey! I've been in the bed a lot. I just don't feel like doing anything. How are you doing?
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
288
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
I’m ok is it chronic fatigue or feeling like you want to be cuddled up in a quilt kind of time?
 

femfatigued

Member
Joined
May 9, 2021
Messages
25
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
@Auriel I just want to sleep all the time and not go to work. Between the depression and pain, I just want to be curled up in bed and sleep. I don't want to go anywhere or do anything.
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
288
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Aw your having a bad time, pain is annoying enough and the fact your grieving too I wish you were able to have more time off I did wonder if that might be why you haven’t been on for a bit. big big big big hugs take care of yourself fems 💙💜💙
 

CDHR

Member
Joined
Jun 17, 2021
Messages
13
Reason
DX FIBRO
Diagnosis
05/2021
Country
US
State
MS
Femfatigued. I feel your pain all to well. I know what you are going through. I have practically the same issues as you do on the Rheumatologist situation. There are 2 that accept my insurance. One works at a hospital that I will never go to and the other accepted my insurance, but doesn't treat Fibromyalgia. He did bloodwork, but didn't even tell me that I was anemic.
I went to my gp 2 days ago and have had more help from her than any other drs I've seen. That is a huge blessing. I am newly diagnosed with FM. Its very frustrating to not know. I was the same way. I wanted to know. And practically made them test me for anything else it could possibly be before I accepted their diagnosis. Come to find out, all my labs come back negative, accept for inflammation and anemia. I am learning that this is not a road that you can follow other ppl's footsteps in cause everyone's symptoms are different and everyone has different medication and tips that work for them. That being said, I would study up on this as much as you can and get familiar with things that cause you to have a flareup. And, as I am doing, learn to stay away from that situation or those people who cause anxiety and tension...Its a hard thing, but that's what I am working on right now for myself. I am even staying away from my own parents They don't believe or support me in this, so I am having to stay away from them cause they are causing alot of anxiety, and as the pressure builds up from dealing with them, the flare up comes. Its hard but this is a great place to start. I am learning so much from everyone here and even though I wouldn't wish this on even my worst enemy, I am certainly thankful for those who know what I am talking about and can understand me now. Hang in there.
 

Shy1shy1

New member
Joined
Jul 6, 2021
Messages
4
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
Yeah I read about tender spots too, it’s quite an older method to try and base a diagnosis on? It really is frustrating when you know you don’t feel right and try to explain how but everything comes back ok etc with the loss of sensation are you able to feel temperature but just not to what you feel is the right amount? Have your symptoms stayed constant and consistent or do the change around?
 

femfatigued

Member
Joined
May 9, 2021
Messages
25
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
@CDHR I don't have support from my family either. My mom passed away in February and was the one person who kept me sane, but she still didn't understand my ailments. My whole family thinks I am a hypochondriac. They tell me to "snap out of it" which drives me nuts. Depression isn't something you can just let go of when you feel like it and when added to physical ailments, it is far far worse. They don't understand and never will. I just filed disability yesterday, but I am not going to even tell them until I get approved. Hopefully, it won't be years and years like some people have to wait.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
@Shy1shy1 From everything I have read, it seems very plausible that I could have fibro. Everything else has been ruled out. The last rheumatologist I went to was 6 years ago and she had the personality of a wet mop. She used the tender point method to determine that I did NOT have fibro, but I think that's BS. Supposedly, they don't even use this method anymore. My appt. with her is in a month and I hope she does not use that method any longer because I've read some people don't even have the tender points. I also have tender places on my elbow, knees, hip and lower back that when you press on them they are sore like a bruise. I have not found anything for the fatigue yet. Since I suffer from depression also, it makes everything twice as bad and is hard to get out of bed. I think CFS is very similar to fibro, but I haven't been diagnosed with either. I usually will get tired of going to dr's and give it a few years rest without pursuing a diagnosis, but eventually when it's bothering me really bad, I will pursue it again and never get a diagnosis. It's so frustrating to know something is wrong and no one can tell you why.
I can relate to what you are saying.
The use of that tender points test has been completely discontinued by anyone who knows anything about FM because it's useless. some people (like me) will react violently to it some days and not on others, and not everyone with FM will react to it at all. It's BS and has been completely debunked. So let her know that if she tries it.

I am still struggling to find what will work for the fatigue, myself. Recently I started taking a supplement that is supposed to help my body absorb fats and thereby give me more energy. I am eager to see if it works. I also have chronic and severe depression, and that contributes to the fatigue considerably because when I am badly depressed I don't want to do anything except try to distract myself from how I feel and some days it's hard to get myself to do anything at all.

What you say about being frustrated is the norm for people like us. Trust me, even when you get a diagnosis of FM that frustration doesn't vanish because they still won't be able to tell you want's wrong. FM is just what they write down when they can't figure out what's wrong, and it does you no good at all except for having something to write down on insurance forms.

I think part of having FM, which I am sure is also true of other similar things like ME/CFS, is that life becomes frustrating a good deal of the time, and learning to deal effectively with that frustration and not let it ruin your life is a big part of adapting and managing the new reality.

There is great value to learning how to accept what it is in the moment, understanding at the same time that acceptance is not approval or apathy, but just acceptance so that you are not spending precious energy fighting what unavoidably is in the present moment. You can work to change what is, but not if you are spending your energy on feeling it shouldn't be that way, or asking why it is that way, or being angry about it. This is something I have learned and found to be very valuable.
There are many things that can help with this, but it's not easy, especially when you have mental health concerns or issues as well. Believe me, I know. But I also know that with time and persistence you can learn to manage it and not to let it run your whole life. It just takes some time and a lot of effort, but you can do it.
 

CDHR

Member
Joined
Jun 17, 2021
Messages
13
Reason
DX FIBRO
Diagnosis
05/2021
Country
US
State
MS
Femfatigued, It really gets under my skin when I am hurting so bad or I am describing the wonderful fibro fog I seem to stay in, and I am told "Welcome to the club; you're just getting older and forgetfulness and joint pain happens to all of us." and then it leads into an hour long list of all their ailments.....I'm learning at this point to keep my ailments to myself and stay away from certain people, even if they are family. They just don't understand and never will. And, there's no reason for me to have a flare up due to their not caring. Its only hurting me when that happens so I just stay away from them.
Ok, so you just mentioned something that I am curious about. I'm in a situation where I can't work. I have a shower chair I use, have constant pain, I don't sleep right, and there is just no way I could ever hold down a job with this. I can't even go to Dollar Tree without coming out of the store writhing in pain. And that's a small store. I have to have help getting dressed and my husband does the housework and buys groceries now. If something were to happen to him, I don't know what I would do. You mentioned disability. Ok, so I have heard it both ways on FM. Some say you can get it, others say you can't.
I don't know if what I am asking is against forum rules or not, and I apologize if it is. Please don't kick me out for breaking the rules, cause this is a serious question and I need some help.... if you or somebody reading our forum can help me, I'd love to know more about disability and how to get started, how long it takes to get it, and also do you have to have a long list of dr. visits to even help prove your case if you can apply for it, and so on. I noticed that you live in the south, too, Femfatigued. I was officially diagnosed with FM just a few weeks ago. I also have osteoarthritis in both shoulders, and diastolic heart failure. I need someone to give me some answers here, cause this is scary. A year ago, I had the osteoarthritis in my shoulders and have been living with that and adjusted my life accordingly. But when all of this other stuff hit me and all at once, I am in a big mess. I can't walk across the floor of my little 2 bedroom house. So, I know I can't hold down a job. So, please elaborate on what you're doing about disability.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
CDHR..........you are not out of line or breaking a forum rule at all. We have had disability discussions here before.

Disclaimer: I have never applied for or been on disability myself.

What I know is that because we are in the USA it is very difficult to get on disability and usually is a long process. Which stinks, but what doesn't stink about American healthcare?!

Last I knew it required a great deal of documentation, so gather and file and organize all of that in copies. I also heard that they won't consider your application unless you are able to prove that you have been completely unable to work for two years. (That info may be outdated, so double check that).

Since it is a federal program, it shouldn't matter what state you live in but you do need to get your doctor(s) on board, and have everything meticulously documented. You want affidavits from people, letters, diagnostic test results, every doctor visit and what they wrote down, your medical records, everything you can get your hands on.

Also, you can Google this and find out what the basic requirements are to start the process, and find out if the two years of no work thing is still part of it.

Best of luck to you if you embark on this process, and know that it will very likely be frustrating, demanding, upsetting, repetitive, and in general a huge pain in the butt before you get results. But if you have all they require and you are able to soldier through the BS and be persistent you can get it. You deserve to have it, and if you decide to apply please let us support you in it and be here for you when you will, inevitably, need to vent about how difficult they make it.
 

DebMarPir

Active member
Joined
Jul 10, 2021
Messages
38
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
PA
You can actually do an updated online test that will evaluate you - not sure how accurate - which will give an indication whether you have fibro. Instead of tender points they use areas of the body. It also asks you if you have insomnia and muscle pain, which are two big ones. You mention light/nausea and those are linked with migraines you mention, which often also can accompany fibro. I think you need a better rheumatologist. That having been said, I am in the same boat, trying to find a good one to get diagnosed officially myself. My internist and an orthopedist both believe I have fibro. But the rheumatologist I saw to be checked first for autoimmune diseases didn't even check me for that, I think he wants to put it all down to arthritis and that's not my issue. He missed the "elephant in the room" as on fibro expert calls it. Good luck.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
You can actually do an updated online test that will evaluate you - not sure how accurate - which will give an indication whether you have fibro. Instead of tender points they use areas of the body. It also asks you if you have insomnia and muscle pain, which are two big ones. You mention light/nausea and those are linked with migraines you mention, which often also can accompany fibro. I think you need a better rheumatologist. That having been said, I am in the same boat, trying to find a good one to get diagnosed officially myself. My internist and an orthopedist both believe I have fibro. But the rheumatologist I saw to be checked first for autoimmune diseases didn't even check me for that, I think he wants to put it all down to arthritis and that's not my issue. He missed the "elephant in the room" as on fibro expert calls it. Good luck.
The thing about FM is that there is no test for it that will determine you have it. So the diagnosis only comes when everything else for which there is a definitive test has been ruled out.

The truth is an online test cannot do that, it can only tell you that your symptoms fit with FM. But the same symptoms also fit with a whole slew of other disorders and syndromes and diseases, some of which are treatable and/or curable. So rather than place any expectations or spend any time on an online test, it is far better to go to enough doctors and get tested enough times that you know for sure you don't have any of the other things it could be.

It's a serious pain in the butt to do that and often very expensive as well. But it is the only way to know. And the fact is that even then you don't really know, because FMS is just what they say you have when you have all these symptoms and they can't find the cause.
Fun, huh?
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
288
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Sunkacola what are other things that fibro can be mistaken for ,see I’ve never had an scans for it only blood tests and the annual rheumatology poke about ,online so far I’ve read m.s, anemia b vitamin def , thyroid problems are there any others my chiropractor thinks my symptoms fit more with m.s but they just won’t test me because of the fibro diagnosis
 
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