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Lainee

Member
Joined
Jan 5, 2015
Messages
18
Reason
DX FIBRO
Diagnosis
00/0000
Country
CA
State
ON
:? Hi I'm new to this support group Forum. Unfortunately not to Fybro:-(.

As a teacher I struggled with Fybro for almost 5 years before I just couldn't do it any more. It was the constant pain at the end of the day; the stiffness of being in one position and having to get students help me move; and the brain fog that kept easily distracted and off track of the lessons that finally pushed me to stop. I had developed depression in the early year and I just couldn't make myself work anymore. I think I stopped as much for them as I did for me. I was no longer as affective as I knew they deserved.

The biggest frustrations I feel is from the amount of time it takes to become diagnosed and then receive disability from a plan that I paid into for 17 years. First the Sleep Study - it took 1.5 years for the results. Then the rheumatologists 3 visits to be diagnosed with nothing in between visits but waiting, and then a refusal to confirm on paper other than to my general practitioner and told not to come back because I was "to much work". Then my GP sent me to a Neurologist - 6 month wait to be told that I first had to see a Geriatric Specialist. A 3 month wait was followed by discussion and 2 more visits, each with a 3 month wait and discussions to be finally told "I don't think its dementia". I finally call back and am waiting to go back to the Neurologist. Almost 2 years to see a Psychiatrist, (at this point I am beside my self and my depression is to the point that I would rather die than continue with life). Our city has very few and at one point while I was on the waiting list they ALL quit, left the city and were not taking any new patients. I had to finally see someone from out of town who could only see me once and referred me to the CBT classes at the hospital. While I was going it was great, I was eager to find a way to get better.

But as soon as the 3 month session was over — there was no backup. It was easy to slip back to the point at which I started. The Depression grew and I finally could take no more, I tried to end it all with a bottle of pills. My husband saved my life, and has since been much more active in my rehabilitation. The Psychiatrist at the hospital continues to see me every 2 months. Although this is great for my depression, there is no focus on finding a way to deal with the Fybro - the root of my problem.

As you all know this is a very short glimpse at my struggle, there are so many little avenues of the journey that I think of it like an old oak tree each trunk and branch a permanent reminder and a constant growth of my life.

How big is your tree?

Lainee
 
When I turned 50 I had my daughters married off ;) and my husband was still commuting to work 68 miles from our little homestead. I thought-at last- I can get all the chores done-which included livestock-and then hit the trails with my horses for some serious riding. Silly me! My father-in-law needed to be moved to our state and though he didn't live with us, I was spending 3-4 days a week on things for him. LOTS of driving! After about a year of this I was becoming so tired and pain-filled. It went on 2 more years; I kept telling myself to quit being such a baby about things and "buck up". I finally gave in and saw a dr. I had to kill off my thyroid as it was killing ME. Then I saw a neurologist for my back. I found I have DDD with fusion in different vertebrae-which causes all the back spasms, and a kidney that came loose from my back ! (major surgery). Last year I had 3 surgeries to my ankles and hand. Now I go to a pain specialist and he found the fibro.
Having to admit I'll never ride again ('cause of the kidney), took me 6 years and much mental anguish.

Silly,stupid me; I have been getting neural prolotherapy injections for my back recently and it happened that I've have not had any fibro pain in the last 3 weeks. Was beginning to think I didn't have fibro after all. (because all the pain went away at the same time I was getting the last injections) Well today that all changed!

I'm very uncomfortable--that's the word Dr.s used when I was in labor 22 hours with my first kid! I am closing in on 60 now and must be still having trouble facing facts.
 
Hi Lainee,

your struggle sounds all too familiar, however it sounds like you have been dealing with it longer than I have. I understand the frustration soooo much with disability.. It took me atleast two years of seeing Rheumatologists, neurologists and my GP until I was diagnosed with fibro, however I have an additional underlying illness that has not been diagnosed. I have had multiple CT scans that show about 15-20 brain lesions, and chronic migraines as well. I am always told that I need to stop looking for answers and cope with the fact that sometimes there aren't answers, and it is merely a case of pain and symptom management. I think that is total crap.

Its also too familiar that you were told that you were "too much work". It took alot of perseverance on my part to have my doctor fill out the disability forms, as he said that there was so much history that it would take too long to deal with. Finally my doctor's completed all the paper work and were helpful enough that I was approved for disability. To be honest I haven't found the neurologists to be helpful at all. They just pump me full of meds that are not effective. Only thing that helps is pain killers.

I currently work in law enforcement and have also paid into these benefits, so I understand your frustration having put 17 years into your career. What you are dealing with is very real. I have also been dealing on and off with depression as a result of my health and it is very difficult to not let it take over. It can be so frustrating when you are explaining to doctors that the root problem is fibro and health problems that causes the depressed anxious feelings.

Please stay strong, I am so glad to hear that your husband saved you and that he is trying to help now. You need that support.
Please message me any time that you need to chat.

My thoughts and prayer are with you.

Lyndsey xo
 
Hey

Thanks for the support. How are you doing?
 
Facing facts. Those words vibrated in me. My first thought was, who's facts? As after all, My God is bigger than.........Man's facts! I'm very angry at this fibro crap today. I had 3 days of great health, today I woke up with my neck chin ankels in pain. It's freezing. And....no amount of Tylenol will help. :(
 
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