Undiagnosed and tired of being tired.

femfatigued

Member
Joined
May 9, 2021
Messages
19
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
Hi, all. First post here. This is going to be a very long post. I have not been diagnosed, but this has been ongoing for over 10 years. My GP from a long time ago suggested I might have it, but I guess he never referred me and I didn't pursue it (remember being fatigued back then). A few years later, I was shaving my legs and couldn't feel part of my leg when pressing the razor against my leg. It eventually moved up my leg, then to my other leg and both arms. As of last week, my face is completely numb too. My GP maybe 8 or 9 years ago thought I had MS. Went to a neurologist & had an MRI. No brain lesions. The meds the neuro prescribed were worse than my symptoms so after a few visits, I decided I would just live with it. I think I was going through menopause during this time so hot flashes and dizziness could have been from that. I've had fatigue & migraines on and off for the majority of my adult life. Last year I woke up from a nap and my ears felt full. I was also seriously tired all the time and could sleep for days and wake up only to still be tired. I was also having vertigo, tingling in my legs, sound/light sensitivity, constant migraine, fatigue. I went to my GP, but had to see the ARNP who is an idiot & misdiagnosed me, but did refer me to an ENT. I had to wait over a month to see them. Before my appt. I also developed TMJ. The ENT thought I had vestibular migraines and BPPV. Waited another month to see neuro and he confirmed this diagnosis (October 2020). Fast forward to this year, my mom got sick, then died. I've had depression/anxiety for most of my adult life, but it is now at an all time high. So add that in with the constant pain, fatigue, migraines, etc. is just more than any one person should have to endure. In the past few months I have had some visual auras that are pretty weird. I've also had swollen ankle/feet quite a few times recently and have thrown up a few times for no apparent reason and I am a person that rarely throws up. I miss so many days of work, I can't believe they haven't fired me yet. I have constant pain to some degree ALL the time. Migraines, chronic back pain, hips hurt, feet burning, feet very cold, numbness over most of my body, too many things to list and this is getting really long. My doc told me years ago that since it wasn't MS, they would run tests to rule out other conditions that mimic MS. They have run every test in the book and ruled out lymes, lupus and even fibromyalgia. Rheumatologist said it was myofascial pain syndrome which is similar to fibro, but because I didn't have all the tender points at the time of the visit it was ruled out. The rheum appt was several years ago, but I got referred again, but can't get an appt. until August. I can't get treated if I don't have a diagnosis, but it has been a vicious cycle of tests, dr's and specialists spending so much money and never getting anywhere. HELP!!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
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Country
Uni
State
Somewhere
Hi femfatigued,

What kind of treatment are you looking for, which needs a diagnosis? I ask because there's no set treatment for fibromyalgia and there is no cure. A diagnosis is only the elimination of everything else that it can be. Just as there is no definitive test that proves a person had fibromyalgia, also there is no test that will rule it out.

The tender points method of diagnosing fibro is no longer used by any doctor who is even remotely up to date because it is notoriously inaccurate. Just because you don't have the tender points doesn't mean you don't have fibro, so if your doctor insists you don't because of that, get a different doctor.

The best thing you can do for yourself, whether you decide to continue the rounds of doctors and tests or not, is to start now, today, doing the things you can do to help yourself with this. Read the post that is pinned at the top of the General forum and start implementing anything there that you think you can do.

Even if you get a formal diagnosis that is not by any means guaranteed to lead you to helpful treatment for fibro. Most if not all of us have to find out own way and the best way is not to depend on the doctors or medications to do everything, because that doesn't work. Heavy duty pain medication is bad for you in the long run, opiates are addictive, many medications have bad side effects in the short or long term, and so on.

When I first was afflicted with this I thought the doctors should be the ones to help me. but after a great deal of frustration and resentment and anger and bad experiences I realized that it was and is largely up to me to help myself. Not meaning that the right doctor can't be very useful and helpful. but finding that doctor is hard, and even if you do they cannot do for you what you need to do for yourself.

If you have severe anxiety and depression (and I can relate to that all too well), then the right medication that will help you with those things may be the way to start rather than pain medication. Stress is a huge factor in fibro, and if you can manage to reduce that it will reduce your pain and other symptoms.
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,447
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Hay love,I don’t have any tender points ,never did have , I’m sure there not using that so much now.I’m pre menopause and I have pins and needles in both arms and legs. And now lips ,
I was tested for ms two years ago and everything was fine ,
I do have problems with my feet and hands so waiting on x rays .sometimes I can’t walk in my foot at all.
But I’d never be surprised if it all came back clear and it’s fibromyalgia.
This illness is and does rob you of everything.
Sleep is a big problem for most here ,when your fatigued no amount of sleep will help.
I’ve always said give me pain over fatigue anyday .
I also have mental health problems and that affects my sleep know end,maybe with the lose of your mum and everything your going through you should ask the dr to refer you to see someone.so I guess I’m saying deal with your mental health first .talk to your dr about the fact you still believe it might be fibromyalgia and work from there .
 

Flexecif

Active member
Joined
Sep 1, 2017
Messages
92
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Diagnosis
00/0000
Country
CA
State
Canada
I hope you'd be diagnosed because that's really the first step for knowing which treatment will work best for you.
 

femfatigued

Member
Joined
May 9, 2021
Messages
19
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
I've been in bed so much, I haven't been on here as much as I would like. I haven't been to work in a week and a half. The problem with being diagnosed is there are only TWO rheumatologists in my area and one of them doesn't treat/diagnose fibro at all. The one that does is the one that has terrible reviews and no bedside manner. She literally was sitting there not looking at me typing on her computer the whole time and I swear she was doing a symptom checker. When she pushed on my neck and asked if it hurt and I said no, she said I didn't meet the criteria for fibro. This was a few years ago, so maybe she has gotten some kind of continuing education since then, but I am still not all that thrilled to be going back to her. I felt the same way all the people who left her negative reviews did. When I made the appt. it was 4 months out (will be August now). With lack of rheumatologists in this area, it makes it hard. My GP is checking into sending me to Mayo, but I haven't heard back yet. It's just very difficult feeling like this and not knowing if I am going to be able to get help.
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,447
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Ahhhh the joy of fibromyalgia and the joy of uneducated drs.sadly we hear this very offen over the years,
Not everyone has tender points.I don’t cry in pain if u touch my neck or knees .in fact I don’t have any tender points and never have,
It’s sad that fibromyalgia is still very misunderstood and studied.I’m from the uk so it’s a bit different .But from what I know the Mayo seems like your best bet to me so maybe push for that.don’t give up angel your get there .it takes a long time for most of us to find out what we got .And you will get there to .some ppl take a few years backwards and forwards to the dr.that’s really not unheard of.try not to get to down .
 

femfatigued

Member
Joined
May 9, 2021
Messages
19
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
I don't have the exact timeframe of when all this started, but I remember my GP from 2003-2010ish thought I might have fibro. We must not have ever followed through with it. I lost my job because the facility closed down and I ended up moving to a different city. By then, I had different insurance and a job that was very hard to get time off from (call center uggghh). I worked there from June 2011-January 2013. I know it was during that time that I woke up with numbness on my ankle. I was shaving my legs and could barely feel myself shaving. That numbness eventually moved up my leg, that was in my other leg, then both arms. I just recently have gotten numbness all over my face. The dr sent me for all kinds of tests. She thought I had MS, but the MRI was negative. I've since had another MRI and all kinds of bloodwork and been to the rheumatologist, multiple neurologists and had all kinds of tests done. They've ruled out MS, fibro, Lyme's disease, lupus, thyroid issues and all those other conditions that have my symptoms. Since there is no real test for fibro, I am thinking that is the only thing it could be, but can't get a diagnosis. I mean, your legs and other parts shouldn't just go numb without something being wrong, so wtf is it? Someone should be able to figure this out. It's just so frustrating.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
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Country
Uni
State
Somewhere
That "tender points" thing is completely baloney. some have them, some don't, and on some days a person will react and others they won't. On some days I'd scream if anyone pushed on those spots, on other days it wouldn't be anything.
And that "test" has been discontinued by all doctors who are up to date at all on fibromyalgia, its diagnosis and treatment. So if someone tries that with you, you know right away that they don't know enough about this syndrome to be likely to be able to help you.

Femfatigued, I am very unsettled by the doctors saying they have "ruled out" fibro.
Fibromyalgia is not something you can "rule out"! there's no definitive test for fibro that they can use to rule it out, and if they are using trigger points as a test to rule it out they are badly misinformed and behind the times, and don't know what they are talking about.

A diagnosis of fibro is a process of elimination....they rule out all the things like MS for which there is a definitive test, and all those things are ruled out, then they diagnose fibro. So I haven't got much faith in those doctors you are seeing.
 

femfatigued

Member
Joined
May 9, 2021
Messages
19
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
@sunkacola Yes, the rheumatologist who barely glanced at me, pushed on a few spots, then started typing without ever looking up at me said I didn't meet the criteria for fibro. She then said I had myofascial pain syndrome. I did some research and it is very similar to fibro and states it can turn into fibro. I checked my records last night and it's been almost 6 years since I went to her, so maybe she will use different criteria this time. I seriously doubt it though. All the conditions that have tests have been ruled out so the only thing left that I am aware of is fibro, so if she tells me again that I don't have it, I guess I will have to give up (again) on finding out what it is. That is unless my GP refers me to Mayo Clinic. I know I have tender places around the inside of my elbows, knees and my hips hurt like crazy. The pain is bad, but the fatigue takes over me and all I want to do is sleep. Add depression and anxiety to that and it's all I can do just to barely function. Not to mention my whole family just thinks I am a hypochondriac and need to "snap out of it." I want to scream when I hear people say that. I pretty much only have one friend that understands, so the most support I have is on this forum, but I am very thankful that at least I have that.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
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DX FIBRO
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Country
Uni
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Somewhere
Can you go to a different doctor? that one has probably not changed.

Ignore the people who put you down or don't believe you and if it is possible remove them from your life. They are only harming you.

So sorry this is so difficult. If you really need a diagnosis, for instance for insurance purposes, then I recommend going to a different doctor, because it sounds as if you won't get one from the one you went to.
 
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