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Fibromyalgia
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Posted 12/3/2014 1:01 AM (GMT 0)
Hello all,

I just wanted to post a little info about myself and see what everyone thinks...I know there are a lot of folks on here that have been dealing with problems similar to mine for far longer than I have, and I wanted everyone's opinion.

I was previously treated for what was thought to be Seronegative Tertiary Lyme Disease in 2012. I had severe joint pain all over my body, and was essentially bed ridden for a long time. I actually had to drop out of school (I was in dental school)...fortunately I was able to get into medical school, and that is what I am currently doing. I've learned its far more important to listen to patients' stories than try to memorize facts out of a book.


I had improvement in my joints, but still to this day, I have chronic pain in my left knee, right elbow and all along my back (it feels as if its in my paraspinous muscles and around my scapulae)



I also have had chronic diarrhea since then as well...negative for C. diff though


My main issues are the severe joint pain and stiffness on most days. I was also negative for RA, Lupus and everything tested on that common autoimmune panel blood test (the name is escaping me right now)


I am seeing a very nice pain management doctor, and currently I have started Lyrica 25 mg 2x day and Nucynta 50 mg 4x a day. This has helped tremendously in my ability to get moving. I understand that the pain will never completely go away, but I am only 24 years old and I used to be extremely fit and active. As long as I can at least do some light exercising, I would be very happy.


I am just very concerned about my future. It is important to me that I am able to work hard everyday, as I want to become a pain management doctor myself, or possibly Physical Medicine and Rehab....so that I can help people that are suffering everyday. My own pain is what is motivating me everyday to work hard, but there are some days the pain is so intense that it is holding me back.


I am currently being worked up for Crohn's disease as well. My Sed rate was high, around 45, and my CRP was also very high. I've also had eosionphilia for quite sometime...my colonoscopy and upper endo showed that I had esophagitis, gastritis and colitis. I am awaiting the pathology results for the biopsies.


If anyone could weigh in their thoughts on what is happening, or any advice whatsoever, I would be very, very grateful for it. Thank you for taking the time to read this.
Posted 12/3/2014 2:00 AM (GMT 0)
Hi, and welcome! I have Crohn's disease and you can have what is called Crohn's arthritis along with the diarrhea. I have some of that and it affects my elbows primarily. Actually when fibro hit me it hit my elbows the worst. It felt like I had banged my elbows really hard and I had tha raw nerve pain running down my arms into my hands and it stayed that way for over two weeks.

My back started having extreme pain a few years ago so I saw a board certified rheumatologist and after a myriad of tests I was diagnosed with ankylosing spondylitis along with fibro. My CRP and ESR were high too. I also had sacroiliitis too. I was put on ibuprofen and Robaxin and am doing really good now. The Robaxin made a significant difference for me and it helped me sleep, too. I only take half of what was prescribed so I don't have the side effects. He wanted me to be on Remicade infusions but I declined and am glad I did!

Along with the ibuprofen and Robaxin, I use Tylenol, magnesium malate, and vitamin D3 to help with pain and fatigue. I also walk daily as a form of gentle exercise and I pace myself when doing things. All of these things help me to live a full and enjoyable life in spite of fibro.

Be sure to check out Fibro 101...the first thread on the forum. There are good links to information about fibro. There are links about the supplements I mentioned above and how they work in the body.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 12/3/2014 3:42 AM (GMT 0)
so sorry to hear what your going through, congratulations on the med school though! that is great! My doctor was sure i had lupus but only 3 prominent symptoms and i needed 4 for diagnosis, i had a series of blood tests, 3 different series actually, checked for every autoimmune disorder out there, all my blood work came back normal, I've had bone scans cts mri's.. thank goodness my husband is a radiologist! but nothing but a little osteoarthritis and a pinched nerve between L5 and S1 on the left side. i waited 7 months to see the "best rumy and was diagnosed with Fibro. I have been on Lyrica, gabepentin, cymbalta, zoloft prednisone hydrocodone paxil, welbutrin, celebrex, meloxicam, and viibryd, and clonazepam which I've been on for years anyway as needed. the only thing that i could tell helped at all with the pain was gabapentin once i got up to the right dose...900 mg that worked for four weeks and then i felt like i was back at square one i literally felt like i had been hit by a train. my rumy said the side effects got worse at higher dosage and recommended Lyrica, at 415 dollars a month it did not help that well, and my fatigue was even worse. so I'm not going through what you are, but i feel your pain, i very much admire you for your ambition. I have always been very active, energetic fly by the seat of my pants person, and now i can't even get out of the house. I really hate it for my children and husband. especially at this time of year to be at an all time low. ick! stay strong and motivated! I'm glad lyrica is helping you! I know the pain never goes completely away but it can be tolerable. god bless you
Posted 12/3/2014 5:02 AM (GMT 0)
Sherrine, thank you so much for the reply...I've read there's a big connection between Crohn's and Fibro...what is your opinion and experience with this?

I'm not sure if I have arthritis from Crohn's or Fibro...I don't feel like I ever have fogginess, I just have a lot of pain that worsens with stress, and on the bad days, I am very fatigued...definitely the feeling of being hit by a train.

Also, do you think yoga or tai chi would be beneficial to reduce the pain and help the musculoskeletal pain? I used to be big into powerlifting, but thats pretty much out of the picture. I am still fairly strong and I try to lift weights when I can...it sometimes feels like lifting weights helps reduce the pain for the rest of the day and slightly into the next day.

I'm just trying to get a good healthy routine down, as well as figure out a simple but beneficial diet...I also take vitamins..I started on a lot of fish oil, vitamin d3, a multi, some magnesium and a b12 complex. I will definitely look through the 101 post for some dieting suggestions, but if you have any personal tips that you'd like to share, that'd be great.

I'm really hoping that medicine will find us better answers for pain...I'm very passionate about this because how it affects me, and more so, how it affects so many people like you and everyone on this forum. We need to enter a new era of pain reduction as a primary goal, because so many things would follow it. People would exercise more, lose weight, better diabetic control, blood pressure and cholesterol, etc. I just feel pain is so often overlooked in our society and our government fears pain medication so much...its been demonized and so have many suffering patients as well...I really strive to change this, at least as much as I can as one individual. I hope to lobby one day to the government as a physician representing and supporting pain patients of all types. Life is hard enough with pain, our government should not be making it even harder

Anyways, sorry for the rant, but it really inspires me to talk with other pain sufferers. We will get better one day. We just need to keep fighting on, together.

Take care and I will talk to you again soon!
Posted 12/3/2014 5:10 AM (GMT 0)
Tton,

Thank you so much for all of the kindness...I'm so sorry you have had to, and continue to endure all of those problems. I'm feeling very much the same way...I just don't know what is going on anymore.

I really hope I can get some answers soon...I just want to be healthy and active. I'm getting married soon, and I just want to be able to be a good husband, and eventually a good father. Sometimes the pain just sweeps me off my feet, and I feel like I cant perform the simplest of tasks.

Once again, I really appreciate your support. Please feel free to PM at anytime if you need to talk to someone, I know we were talking a bit in another post as well. I hope things get better for you soon, and good luck at your next appointment with your Primary doc. Hopefully he or she can get you the medication you need. Take care!
Posted 12/3/2014 6:56 AM (GMT 0)
If it helps, i was worse in my thirtees than any other time...

I have a huge toolbox of things that help...some days i need a lot of them...i was not doing too bad til last winter my d crashed, that was hideous with all the symptoms of that with fibro...but i am slowly getting through that...

Heat helps, gentle exercise, my doc has me on low dose tramadol, well he perscribes it higher than i can tolerate...but a little helps a lot, as do topical pain relievers. Soothanol x2 is the strongest. If i use that on my back after a shower , my back pain is gone til dinnertime...

A type of therapy called strain and counterstrain really helped to release locked trigger points..i have learned to release those myself now.

I can bring my pain from a 7 to a 4 using accupressure points, or laser touch one, which is a pulsed red laser...
If a storm is coming in a microcurrent unit can bring a good bit of relief

I was able to use turmeric to keep from needing to increase the anti inflammatory.

So there is a lot of help out there and you can get better

Lj
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