Newly diagnosed

Status
Not open for further replies.

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
168
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Been a long hard ride. Over a year of hell that started off with what was thought to be an ear infection. Most of my issues were related to my head; ears, sinuses, jaw. I had other aches and pains but nothing compared to what I felt in my head and chest and still feel. When something affects your head and chest you sit up and take notice. After many tests and appts I was diagnosed with compressed nerves in my neck and spine and then also with Fibromyalgia. At 53 it made me feel really old really fast. I am guessing menopause is playing a role in this as well. I so did not want to take meds but finally gave in and tried gabapentin and that brought NO relief so next try is Cymbalta. I don't sleep well at all. My primary thought of depression and I told her that yes I feel depressed but dont feel like I am clinically depressed. It's depressing to not feel good most of the time and not being able to just enjoy life. My idea of joining support groups or forums was initially to just read everyone else's story and gather info but I guess the idea is to share as well. I am somewhat new to this ride and I hope to find my relief of this.
 

Hiker

New member
Joined
Jan 28, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
01/2020
Country
CA
State
ON
Hi sjbrown,
Even though my symptoms are different then yours, I can understand the long hard ride it takes to receive a diagnosis. I also thought I was starting menopause and it was the causing of my many symptoms. I think I spent the entire 2019 involved in some form of testing and I questioned if my symptoms were all in my head. I’ve been offered medication but have decline. I believe I need to reevaluate that decision.
I hope you can find some useful information on here to help with your journey that we are on.
H.
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
168
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Like you I spent most of last year going to dr's and having a variety of tests. All I could think was if this is menopause this sure is rough or if this is allergies its allergies on steroids! Like you I did NOT want to take pills but I reached a point where I need and want some kind of relief. I just stopped the gabapentin since it did nothing for me and now I have Cymbalta but am waiting a few days before starting to let my body adjust to weaning off the gabapentin. I hate the thought living like this, it is pretty rough most days. I hope that by sharing and just having a place to go where everyone understands what we are going through helps as well. :)

Sabrina
 

Melissa4pooh

New member
Joined
Jan 28, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
KS
To both Hiker and Sabrina, I too am one who tends to steer away from meds (and my father in law was a pharmacist), but I have learned that sometimes our bodies do not make the right chemicals for us to feel like ourselves or "normal". I learned that one from my Zoloft. And now I am here again, trying to figure out what cocktail of meds is going to help me enjoy life again. Best wishes and keep us posted on how your journey is going. Just remember, you are not alone. ❤
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
168
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Yes - I have come to the resolve that I need to do something. The doctor also prescribed magnesium and riboflavin which I didnt hesitate to take. Havent taken either long enough to know if they will help yet. Thanks for the support!! <3
 

ragdollbaby

Member
Joined
Jan 13, 2020
Messages
15
Reason
DX FIBRO
Hello there! I empathize. Many of us have had to go through hell to get a diagnosis. It started in pre-teen years for me being dx (diagnosed) w/migraines, joint pain came a couple more years down the road ("normal" teen growing pains, said the Dr. haha) in my twenties, they dx me endometriosis, in which I had exploratory surgery (@ 36 yo) to find out I never had it. Around the same time I had the surgery, I too, thought I was going through menopause (I am still currently struggling with severe night sweats).. Every Dr. told me I had the flu or some type of infection, sent me home with meds and so on... and to top it off, most of them were rude. I have been on multiple different medications over the years for this symptom, that symptom..
A few years ago, I finally came across THE Dr. that listened to me and in the following months, got my diagnosis. These days, I have declined to take most meds (I take 10mg flexril at night when necessary for spasms and pain) and am experimenting with more natural ways to try and cope. GOOD vitamins do help some ailments as well.
It's an endless hard journey, now with a diagnosis we can at least try to focus on finding ways to care for ourselves better and help encourage each other. I'm happy your here sharing.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,416
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
sjbrown, welcome and I am glad you are here. Take heart, this is something that you can, and will, learn to manage.

If you take magnesium, maybe take calcium with it. When I started taking calcium/magnesium regularly it made the terrible charley horses I would get in my legs subside dramatically. I don't get them nearly as often, and they last a shorter time when I do. I imagine it could help with other things too.

I understand very well how depressing it can be. My best solution so far is twofold: getting outside regularly for exercise, like walking and hiking, and using medical cannabis alongside CBD for the pain, and also for anxiety. The latter might not be for you, we are all different. But I really recommend the former. To whatever extent you can get yourself outside to walk or do any activity you enjoy, it will be beneficial to you.

Best of luck, and I hope we can help.
 

Carolyn Rhodes

Active member
Joined
Nov 27, 2019
Messages
49
Reason
DX FIBRO
Diagnosis
07/2017
Country
US
State
VA
Been a long hard ride. Over a year of hell that started off with what was thought to be an ear infection. Most of my issues were related to my head; ears, sinuses, jaw. I had other aches and pains but nothing compared to what I felt in my head and chest and still feel. When something affects your head and chest you sit up and take notice. After many tests and appts I was diagnosed with compressed nerves in my neck and spine and then also with Fibromyalgia. At 53 it made me feel really old really fast. I am guessing menopause is playing a role in this as well. I so did not want to take meds but finally gave in and tried gabapentin and that brought NO relief so next try is Cymbalta. I don't sleep well at all. My primary thought of depression and I told her that yes I feel depressed but dont feel like I am clinically depressed. It's depressing to not feel good most of the time and not being able to just enjoy life. My idea of joining support groups or forums was initially to just read everyone else's story and gather info but I guess the idea is to share as well. I am somewhat new to this ride and I hope to find my relief of this.
I too suffered in the beginning with my ears, sinuses and jaws. When that cleared them WHAM... my stomach and ribs. After much testing was told it was my IBS. I knew it was more and I thought I was literally falling apart! Then my feet started swelling so bad and turning red, my hands went numb and turned red. By the grace of God I finally got my diagnosis and was told Fibro is your WHOLE problem. It's been a hard adjustment, I walk outdoors when I can, I only take a small dose of Nortriptyline but rely mostly on the supplements. Magnesium, D3, Calcium and CBD capsules for pain. Please know that you are not alone, we all with this dreaded issue suffer in different ways.
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
168
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Thank you Carolyn :) It does help to know we are not alone with this crazy illness!!
 

Chris1227

New member
Joined
Dec 29, 2019
Messages
1
Reason
DX FIBRO
Diagnosis
12/2019
Country
US
State
NJ
Hi😀 Unfortunately, I feel like that's the only type of ride for us. I was only diagnosed last month after years of headaches, pain, panic attacks, heart palpitations, and much more so I get why you are feeling depressed. While I was diagnosed early January I will only start Cymbalta tonight as I wanted to wait until I came back from my business travels. Good luck to you, thanks for sharing and I hope we find some relief with the new meds.
 

Suevst

New member
Joined
Dec 5, 2019
Messages
4
Reason
DX FIBRO
Diagnosis
12/2019
Country
US
State
WA
My diagnosis came out of the blue by a Rheumatologist I was seeing about my hands. Although I had thought about Fibromyalgia, I never mentioned it to my doctor. I got a second opinion from a 2nd Rheumatologist and the diagnosis was confirmed. The Rheumatologists do not treat me, they suggested medication that my Primary Dr prescribed. He is now “treating“ me by prescribing meds. Is there anything else he should be doing? what does “treatment” mean? I am interested in asking him why he didn’t suspect Fibromyalgia the next time I see him. He has been treating my aches & pains mostly by sending me to PT and refusing to give me any pain meds because of my age. I am curious if he just thought I am a complainer, or a drug seeker.
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
168
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Treatment can be many things. Therapies, medication etc. I had tried to do without any kind of meds other than the supplements prescribed but I am going to have to try something. I tried the gabapentin but it didnt help and just made my head foggier. Next to try is the Cymbalta. Hopefully that will help. So many symptoms associated with Fibro - not fun to figure out for sure!!
 
Status
Not open for further replies.
Top