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Hello! My name is Ariel and I am from Ohio!


#1

Hello everyone!

My name is Ariel and I am a new member. I have never joined an online community so please, bear with me as I am still learning to navigate the site.

A few fun facts about me:

  • I am married to my best friend
  • I have two fur babies that I claim are my children
  • I am in college to obtain my Bachelors in Social Work and a minor in Addicitons (graduate next year!!)
  • I live in Ohio… GO BUCKEYES!!
  • I love to read, garden, spend time with my family and dogs, football (O-H-I-O), and love learning about history.

A little about my journey to my diagnosis with Fibromyalgia:
When I was a young teenager I was diagnosed with PCOS, which is polycystic ovarian syndrome. I was told it was incurable and something I would have to live with the rest of my life. I always had other odd symptoms along with my PCOS but doctors either never addressed it or summed it up to my “hormones”. Fast forward to about four years ago, my husband and I got married and we decided to start a family. I was put on numerous rounds of fertility drugs which, unfortunately, resulted in a failed pregnancy. This ordeal really exploded into something bigger for me as I was experiencing not only grieving, but the most intense pains I have ever felt.

It was so bad that I couldn’t stand to be touched and I would cry and tremble if my husband would rub my back for me. The only relief I could find was honestly laying on the floor flat on my back and cry myself to sleep in agony. My husband and I decided that we needed to switch gears by focusing solely on finding out the cause of my pain. It took me years to finally get a doctor to listen to me and my symptoms. I went to three different doctors before one would even believe I had these pains I was experiencing. I had numerous tests done and everything came back “normal” for them. The only inclination that proved I was in pain was that my heart rate was really high and I shared I was missing a lot of classes. I cannot begin to tell you how many times people have told me that I am nothing more than a medical mystery and there is no help for me. That or I was too young to be experiencing such intense pain and symptoms. Finally, my current doctor, requested all my information and previous medical records and decided he was going to get to the bottom of what my issues were. He diagnosed me immediately with Fibromyalgia. He referred me to a specialist (which took MONTHS to get in to see) and also referred me to physical therapy.

My first consult with the PT was really humbling and overwhelming. She told me numerous times she never saw anyone with my condition at my age to such an extreme. I was so weak and fragile and inflamed that she put me only in the pool to do very light workouts. The pool honestly saved my life! I found immediate relief and I craved my therapy sessions. However, my insurance only covered a short amount of therapy sessions and since I am in college (and we are newly married) we couldn’t afford the membership to join the facility at the time. My appointments with the specialists was not fulfilling in the least bit. He seemed very old school and had a hard time taking me seriously. He prescribed me with a few medications that didn’t really work for me and one that was extremely expensive that my insurance wouldn’t pick up. I stopped going because I felt I wasn’t getting anywhere with that specialist.

Since then I have been on a journey of healing for my body. I have been learning the fragile balance that my body needs to monitor and control my fibromyalgia. It has taken me years to get to where I am today. Also, with my diagnosis of PCOS it was nearly impossible for me to lose weight. Due to my health, I literally packed on the weight. It was stressful on my body and caused me a lot of pain and frustration.

Here within the last 9 months I have really been serious about the health of my body and doing my own research. I have been taking many probiotics and really watching what I eat. I follow a very close gluten free/dairy free diet which has helped tremendously!!! I was diagnosed with a gluten sensitivity and lactose intolerance so cutting out the foods that fall under those categories (and adding in a lot of probiotics) has really lessened the inflammation in my body and for the first time in my life I have lost weight. I am close to the size that I was when I first met my husband. It just blows my mind! My weight loss has also given me energy to really try and incorporate very light exercises which was really painful at first but I pushed through it and it has helped a ton! My husband also bought me a pool so I spend much time in my pool stretching and relaxing my muscles and joints.

I am to the point where I feel I hit a plateau in my “recovery” and really wanting to learn some new tricks and coping skills with Fibromyalgia. Although this diagnosis made me resentful for a time, I now find it extremely fascinating especially when I see how it relates to every aspect of my body, other health issues I have, and just my life in general. Obviously, stress is a huge trigger for my flare ups. I am currently in an accelerated program to obtain my Bachelors in Social Work and a minor in Addictions. I graduate a year from now so my stress levels are currently pretty high. This last month I have suffered from many flare ups which makes it difficult for me just because of where I am in life right now.

I am looking forward to getting to know other people who endure chronic pain and hearing other people stories. Empathy is very powerful and I love seeing how this new trend of people speaking out on chronic pain / invisible illnesses is beginning to flourish.

I am a firm believer in social support and that awareness and education is the key to overcoming many issues in life. I feel this is the perfect place for me to begin that journey!

Ariel


#2

Hi Ariel,
Welcome! Thanks for sharing so much and so honestly about yourself!
The pain specialist I was referred to recommended that I read a book called The Brain’s Way of Healing by Norman Doidge. I’ve only just started reading, but it makes so much sense, that I hope others can benefit from it too! Hopefully this might help with the plateau.
I really struggled to accept plateau, and I find I’m not very good at looking at how far I’ve come, just how far I have to go, so good on you for such a positive attitude!


#3

Several things for you to consider/think about Ariel:

  1. you can always do an appeal to your insurance for more PT, call member services for info on how to do with your plan, your PT person is also able to file an appeal for more coverage on your behalf

  2. Not sure what college you attend, but you should have a pool and sports medicine program there (are you at OSU?) and should be able to get a student discount for membership

  3. If you college has a PT program you may be able to get reduced rates or even free sessions by working with students

  4. Local gyms may be an option for you, particuarly a local community center with a pool. Or a local YMCA. You don’t need a therapist to do therapy, you can manage your own. You can also go to therapist and tell them you need a daily pool workout you can do at home and they’ll hook you up with something. Some local PT centers offer monthly memberships for very little money, look into that as well to get access to a pool. I know where I went to PT you could “join” for $25 a month and have unlimited access to the equipment.

azurelle


#4

Hi Ariel, I go by reader1 but my name is Lynn. I think it’s great you’re in college. I too studied Social Work but not as far as you. My journey with fibromyalgia is new, so I’m just learning. I think it’s been there for years and I’m not sure about arthritis issues also. Best wishes with school and your hubby.


#5

Hello Jess!

Thank you for the recommendation! I definitely enjoy reading so I will be adding that book to my library very soon. Yes! I tend overlook the importance of reflection and how far I have come as well. This is something I need to be more mindful of on those days that I just feel so discouraged. Perception is reality so if I can just remember to change my perception I am sure that I will be able to overcome that lowly place of discouragement.

Thank you for your reply!

Ariel


#6

Those are all very valid points I can consider! When I was in PT, we did actually petition to allow more coverage and that did help for the mean time. That was a couple years ago and I just feel that the “plan” she created for me no longer helps as much. I suppose I can call and set up an appointment to be re-evaluated for a new “plan” of therapy that I can use at home in my own pool.
In regards to my college, they do offer a discounted student rate for their local YMCA. I will have to check into that the next time I am on campus. The downside is that I live in rural Ohio which means it usually takes a long drive to get anywhere which is why we opted to put a pool in my own yard so that I can use whenever I need it. I am curious if they have a sports medicine program on my campus. I’ve never heard of one, but I am definitely going to check into it.

Thank you for all the suggestions! Definitely things I need to look into!

Ariel


#7

Hi Ariel! I am so proud of you for going to college to that degree that I know you will love. I’m 59 today, but at 53, I decided that I wanted to go to college and get my PhD. I work full time, so I don’t know what I was thinking. LOL. Today, I am collecting data for my study. It’s been rough, though. I was just diagnosed with PTSD, something I thought I had overcome. But the stress of my dissertation and working full time just hit me hard this last year. So, to say the least, I haven’t done nearly the amount of work that I did the year before. I am slowly getting to where I am working on progessing through the dissertation a little bit better. I’m not where I want to be, but at least I’m working on it. My PhD is in General Psychology and my undergrad and graduate degrees are in business administration, so this is totally a different direction. However, it is what I wanted to do, so I went for it. My chair tells me that PTSD is very common when going through a PhD. Yikes, that is something that I never expected. Marriage problems are a big issue, too, but after a rough year, I feel like we are better for the wear. We’ve learned a lot about year other.
I love a pool! But we don’t have one anymore because it got old and my husband didn’t want to replace it. I try to laugh throughout the day and appreciate the little things. It sounds like you have a lot of experience learning about your body and what it can handle. I think that has not been easy for me. I mean, I used to be very active and I yearned for that again. I have come to an acceptance of what i can and cannot do.
I have had a lot of respect for my rheumatologist until this last visit. I felt like she was ridiculing me and treating me unfairly. I have very much thinking about locating another one. By the way, I live in Indiana; close to Ft Wayne! We’re neighbors!


#8

I know what u mean,the only thing I can tell is keep pushing and know ur limitations and what triggers the pain.My trigger is carrying things that starts my nerves jumping all over


#9

Ariel I lost my feed I was saying carrying things


#10

Things gets me going the pain is unexplainable


#11

That part of being touched really cought my attention I had the same problem.Thank goodness for my Drs.the have on a regiment of meds that seem to work,they are working although nothing takes the pain completely away they make it bareable. Just know your limitations. I have had this before they knew what it was.That started in the early 80’s.