Did I diagnose myself? New member, please help

bckseat_drver

New member
Joined
Dec 5, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
09/2020
Country
US
Here’s my first post - I’m honestly not quite sure how to start this but I’ll give my best starting with the timeline of my symptoms.

A brief background about me I already know to be true -

I have anxiety and depression issues, and suspected PTSD or potentially bipolar disorder. I see a therapist regularly for CBT. I have always had some issue with managing stress/emotions, sleep disturbances/feeling fatigue often, and some gastric issues mimicking IBS symptoms. I sweat unnecessarily and suspect some hormone issues related to that. In January of 2019 I was diagnosed with severe chronic allergies that I so far have struggled with seeing results in my treatment.



Timeline of symptoms -

I first noticed in November of 2018 when I was 23 I was having a burning pain in my elbows and sometimes the whole upper arm. It sometimes was felt in my legs around my knees, but was mostly in my arms. This lasted for maybe a few weeks, and became bad enough that I had went to my GP. He ran some blood tests, including a metabolic panel and for thyroid and autoimmune diseases. Unfortunately nothing had came up to show an explanation, and so I had waited for it to pass on it’s own, which it did at the time. Since then I have felt symptoms on and off for short periods of time, maybe a few days.

Since September of this year it has increasingly gotten worse. I’ve noticed episodes of “flares” that last for weeks at a time and are intense. It always feels worse with stress related situations but can happen at any time. My symptoms now consist of that burning pain, which is widespread but I’ve noticed targets certain areas such as my feet/ankles, knees, elbows, hands/fingers and sometimes neck and hips. I often have numbness and tingling in my limbs/hands and feet, or limited range of movement. I have noticed I tend to strain or pull muscles often which adds to the already existing pain, and can take longer to recover from. Brain fog happens way more intensely when I’m feeling the widespread pain, and it can be very difficult to concentrate, understand words or overall just not be able to do anything other than wanting to sleep.

I had done my research on what this could all be, and to me it seemed to point to fibromyalgia. My mother was also diagnosed at a young age with CFS and over active nerves, and had the same symptoms I do. So by end of September I had went for another blood test, with still no results indicating anything other than speculation that it is just “mental”. I had brought up fibromyalgia to my GP, and he had said it’s possible but did not seem confident. I was told to exercise, sleep well and to take Cymbalta for a trial period to see if it would help. (I have anxiety with taking medicine, so I have not taken this yet) but I have tried other stress relieving activities.

I decided to come on here for support, many people around me don’t believe it to be real or have just speculated that it’s in my head. Ive been called a hypochondriac, dramatic, crazy, you name it.. It’s caused strains on my relationships and my job, it’s really embarrassing and frustrating. Is this really fibromyalgia?? I’m terrified of going to doctors or taking medicine now because of feeling rejected or not getting full answers. I really just need a push to do what I need to do to help this, and know that it can get better.

Thank you to anyone who will read this or respond
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,450
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi driver,

What you are describing definitely sounds like fibromyalgia. However, FM is a diagnosis arrived at by systematically eliminating everything else that it could be, and there are a lot of other things. If you have had sufficient tests to do all of that elimination, then that is what's left.
Don't diagnose yourself, though. Make sure you get all the tests, and find a doctor who listens to you and will believe what you say. It is not all in your head or caused by your mental state, even if you have some difficulties with mental illness. Your mental state can make it worse, or can help it to feel better, but is not likely to cause it outright.

Anyone who calls you names because of this should not be allowed to be in your life. They are only making it worse, and you need people who will be helpful to you, or at the least be neutral.

Although you are understandably afraid to go to doctors, you have to grow a thick enough skin to do it. If you have FM, doctors are in your future. Just remind yourself that you know what is true. You know it. What other people say is unimportant. If a doctor doesn't believe you don't go back to that doctor and get a different one.

This forum is full of people who are here to help and support you. We know what this is like, and most of us have been through a lot with doctors. We are here for you.

And check out my post that is at the top of the General forum. It gives a lot of advice on how best to manage this syndrome, and there may be things there that will help you.

As for Cymbalta, there are mixed reviews. Some say it helps. More people say they had terrible side effects from it. I had side effects and it didn't help. Your experience may be different. but if your gut says don't take it, maybe it's good to listen.
 

bckseat_drver

New member
Joined
Dec 5, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
09/2020
Country
US
Hi driver,

What you are describing definitely sounds like fibromyalgia. However, FM is a diagnosis arrived at by systematically eliminating everything else that it could be, and there are a lot of other things. If you have had sufficient tests to do all of that elimination, then that is what's left.
Don't diagnose yourself, though. Make sure you get all the tests, and find a doctor who listens to you and will believe what you say. It is not all in your head or caused by your mental state, even if you have some difficulties with mental illness. Your mental state can make it worse, or can help it to feel better, but is not likely to cause it outright.

Anyone who calls you names because of this should not be allowed to be in your life. They are only making it worse, and you need people who will be helpful to you, or at the least be neutral.

Although you are understandably afraid to go to doctors, you have to grow a thick enough skin to do it. If you have FM, doctors are in your future. Just remind yourself that you know what is true. You know it. What other people say is unimportant. If a doctor doesn't believe you don't go back to that doctor and get a different one.

This forum is full of people who are here to help and support you. We know what this is like, and most of us have been through a lot with doctors. We are here for you.

And check out my post that is at the top of the General forum. It gives a lot of advice on how best to manage this syndrome, and there may be things there that will help you.

As for Cymbalta, there are mixed reviews. Some say it helps. More people say they had terrible side effects from it. I had side effects and it didn't help. Your experience may be different. but if your gut says don't take it, maybe it's good to listen.
Thanks so much for the reply, this truly did help boost me confidence to keep trying. I’m thinking the next step would be to see a Rhumetologist for a second opinion/to get a legitimate diagnosis? I checked out your post on the forum for things to try, and I have already tried a few before that have helped me. So it does reenforce that I need to just stay consistent with doing them. I’m glad I found this site!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,450
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
A rheumatologist would be a logical next step, yes.
Of course a diagnosis doesn't really help you physically since they don't know of any treatment that works for everyone. But it is very good to have nevertheless, because it allows you access to insurance covered care you may not have otherwise, and gives you something to put down on a form. And it also tells you firmly that you are not nuts, and there's a huge community of people who have the same problems, some of whom are here. I'm very glad that I could help you and will in whatever way I can. Let us know how it goes.
 

Nana anna

New member
Joined
Mar 18, 2021
Messages
3
Reason
DX FIBRO
Diagnosis
10/2003
Country
US
State
PA
If fibro is your diagnosis, don't stop trying for help. Your quality of life is worth it. Pace yourself. This is one of the greatest tools in your belt. Don't I overdo. Give time to unwind. If your state has medical marijuana, you can look into it. It may be the right thing for your pain, maybe not. For me it was a game changer. Anxiety is much lower which helps muscles to relax. Also relaxes the central nervous system. I take gabapentin, but I'd like to titrate off. IMO, it controls too much of my nervous system not in a good way. If I miss a dose, everything goes off. So much pain, and it causes my heart to bother me.
 

Alta

Member
Joined
Mar 14, 2021
Messages
24
Reason
DX FIBRO
Diagnosis
03/2015
Country
US
State
TX
I take Cymbalta and it does help me. I take 30 mg twice a day. I am also bipolar and take 450mg of Oxtellar a day which has also helped. I have also had PTSD. I have RLS, my pancreas does not function as it should, I have IBS when I am stressed. I take Synthroid for hypothyroidism. I had to go on dialysis due to granulomatosis w/polyangiitis and had a transplant in 12/17. I had 2 fingers and 3 toes partially amputated due to Buergers disease and have other problems. I tell you this not to complain or compare myself to you or brag. I tell you, you will survive this and be stronger because of it. You can always come on this forum with your tears, fears, and anything else and you wl find true support, understanding, and anything else you may need. I hope this helps.
 
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