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Rose316

New member
Joined
Apr 13, 2015
Messages
1
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
North Carolina
Hello everyone,

I just found this forum while searching the internet for support.

I am a 25-year-old female who has been struggling with physical issues for around 5 years. I desperately want support and answers. I feel like people think because I am young and "look healthy" that there is no way I can feel as badly as I do and that I must be dramatic, or making it up, or that it's all "in my head."

But, I know that's not true. I used to feel healthy and then I didn't anymore. I read that fibromyalgia most commonly affects women in their childbearing years. It's so hard because it's a "ghost illness," but it's no less real just because people can't see it. I feel it every day!

I am going to share a bit about my fibromyalgia journey so far.

In my research, I read that fibromyalgia is oftentimes triggered by a traumatic physical or emotional event. I have had both types of triggers in my life and can see how it's all linked together. I grew up very fit and active and ran cross-country and track for many years, through college. I felt great. Then, when I was 20, I had a baby. I think pregnancy and birth are both pretty big physical things to go through. Well, not only did I have a baby, but I also lost my baby. That was a huge emotional trauma to go through. I had other things happen in my life that were emotional traumas that I won't mention here.

Anyways, shortly after giving birth and losing my child, I started having a lot of back and neck pain and pinched nerves. I went to a chiropractor and got regular massages and even went to physical therapy. I wondered if it was just because I was out of shape or that the birth had thrown my body off somehow. Since pregnancy, my weight has gone up and down some, but I am now at a healthy weight for my height and age. Nothing really seemed to help my pain much. It might have helped manage the pain a little bit while I was receiving care, but it didn't last and didn't help much. I even got an MRI to make sure there was nothing wrong in my back or neck.

When I was 21/22, I felt extremely ill and literally thought I was dying. I had multiple symptoms. During that time, I spent some time in another state and was not getting much rest. Someone told me I should get tested for mono, so I did, and the results came back positive. I must have been struggling with it for several months and had no idea. All my symptoms started making sense... the extreme fatigue, swollen glands, sore throat, difficulty breathing, etc. People thought I was lazy, but I knew it wasn't that. The mono diagnosis helped make me feel validated.

I thought that would eventually go away, which a lot of the symptoms have. However, month after month went by, and I still felt so tired and ill much of the time. My immune system feels like it's all messed up. I so easily get colds and bronchitis and have allergies. And now fast forward to me being 25, close to turning 26, and I am still ill. I have read that mono can sort of progress into fibro.

I am just sick and tired of feeling sick and tired. I think I am too young to feel like this! I miss being fit and active. Other people hate running and I love it and am jealous that I can't do it! Exercise hurts me.

My symptoms can change, but the ones I have been experiencing as of late are pain in my body in general... the pain can ache, throb, shoot, and tingle...back and neck pain, deep, radiating ache in my hips and legs, my legs feel tingly and restless and numb sometimes (these things make it difficult to fall asleep), pain in my shins, unexplained bruising, pain and tightness in my jaw, swollen lymph nodes in my neck, fatigue, never feeling rested even when I get a lot of sleep, trouble swallowing, IBS symptoms, acne, brain fog, extremely sensitive to smells, sounds, and bright lights, occasional headaches, carpal tunnel, charlie horse in my feet often, sciatica, anxiety, depression. These are the things I can think of right now.

I have gone to my regular doctor and told him my symptoms and he took several blood tests which all come back normal. I appear healthy, but I know I don't feel healthy. It's so frustrating because there is no blood test that proves this is what I have. I want to feel validated! I went to a rheumatologist that my regular doctor recommended me to and she took more tests and said she thought I have fibro. But I don't know if that was the "official diagnosis" and she didn't really say what I should do. I feel like doctors don't listen or care or take this seriously. And I feel so isolated because my family, besides my mom, don't seem to understand or take me seriously. It sucks to feel so alone and misunderstood!

Has anyone else had similar experiences or symptoms? What about treatment options? Until now, I haven't accepted that this could be fibromyalgia. I always thought I would "get better" and year after year, I haven't. I don't know what I should do as far as treatment or management. I would prefer not to take medication because of all the side effects with that and I don't want to further harm my body. I would like to treat it more "naturally."

Also, in about half a year, I will be losing my medical insurance, and don't know what I'm going to do. Has anyone tried Plexus? I heard people on that have had good results.

I am afraid of what my future holds. I don't know if my body could sustain another pregnancy with how I feel, but I want more children. I am in college right now and will be for another year (online, so I'm able to do that from home, and still have a hard time concentrating and keeping up with the work). But I am afraid I won't be able to provide for myself. I have not been able to work for a while. Last I worked, I was nannying and simply lifted a little boy and my back gave out. I haven't been working since. I don't want to get disability because that feels like "giving in" and I feel too young, however I *know* because of my pain and fatigue, I cannot work. However, I have no clue how to even go about disability and if they would approve me.

I would appreciate any feedback or tips. Thanks for listening!
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Rose316,
First off hello and welcome to the forum. I am so glad you found this forum as our members are very kind and understanding, and will answer your questions and offer support and a shoulder to cry on. We all have gone through the many tests and trials of getting a diagnosis and often the mental pain of not being believed by friends and family, and even doctors. This mental strain can often be worse than the physical pain because there is no one we can confide in or even feel safe with when all we hear is how lazy we are and that nothing is wrong.

But here we try to provide solid answers to which medications have worked for us or not worked. We offer ways to sleep better and relax, and alternative ways that can improve movement and our lives. I think anyone who reads your message will feel a deep need to help you feel better and also let you know your not alone anymore.

Please consider me a new friend and know I am here if you need someone to listen or just give you a cyber "hug" to help chase the blues away. I look forward to chatting with you on the forum and look forward to seeing your posts on the forum. :)
 

Bsmoothy91

New member
Joined
Apr 17, 2015
Messages
2
Reason
Undiagnosed
Diagnosis
00/0000
Country
AU
State
4503
Wholly shit. Your story and my story are almost identical!
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,377
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome to the site, I'm sorry for your loss ,I do hope we can help support u with this rotten illness.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
USA
State
Texas
welcome to the forum. i look forward to hearing more and helping you if i can.
 

Ruralchick

Senior member
Joined
May 2, 2014
Messages
325
Reason
DX FIBRO
Diagnosis
09/2013
Country
US
State
AZ
Rose 316,

Welcome! Sorry you need to be here but glad you are. I understand how you expected to get better each year, I too thought so, but every time I addressed a problem there were more layers underneath! Please don't worry about the future, you have enough on your plate now and stress can make you so much worse. We will help anyway we can. Take care, hang in there. Answers sometimes come slowly but there will be some for you.
 
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