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Hope....

May 19, 2016 11:50 AM

I'm a 32 year old female recently diagnosed with fibromyalgia. It started I guess when I was 15 I did gymnastics and cheerleading and my left knee started to hurt. A few years later my right knee. After that my left hip and then to my right hip. Most recently my spine, neck, lower back and right ankle have succumb to the pain. I've had X-rays and MRIs done on my knees that show arthritis. I've been through physical therapy several times and always assumed the rest of the pain was caused by my bad knees. A little over a year ago I was fed up with the pain and I was referred to a rheumatologist by an orthopedic doctor who looked at my symptoms and did a blood work in which I tested positive for HLA-b27 gene. This is the gene that causes hereditary diseases like Ankylosing spondylitis, Reiters syndrome, and RA (which my dad and aunt both suffer from) among others. I first saw my rheumatologist on December 31 2015. He was extremely thoughro and immediately ordered physical therapy, X-rays, and MRIs of my hips and spine. I was shocked when there wasn't any arthritis for him to see except a small amount of deterioration in my neck. With him knowing my history of severe depression and anxiety he diagnosed me with fibromyalgia and Rynards phenomenon. I was Perscribed Cymbalta, he begged me to quit smoking and talked to me a lot about breathing techniques, exercising, and getting hold of my depression and anxiety. That was in April. Since then I haven't taken the cymbalta bc I'm very sensitive to side effects and apparently that medication comes with several. I use askapatient.com before I take any new medication and reviews were terrible. I sunk into a deep depression, which isn't unusual for me but I'm looking for a way to deal with my body and mind possibly in a more natural way. I'm not sure why I'm writing this or what I need from it. Support, understanding, to hear other people's stories. It's hard to wrap my head around much of anything these days maybe there is someone out there who can help me navigate through all this without judgment and without "brain zaps" from meds.
Really I'm just looking for some hope. I don't want to live like this anymore.

May 19, 2016 4:50 PM

Hopefulbluefeet, I'm sorry you're going through all this. Everyone's story is different. Everyone's coping methods are different. But we all understand chronic pain and how difficult and challenging just getting through one day can. I'll share my story (as short possible) and hope it helps. It took 5 years for me to be dx with fibromyalgia, and another 2 to get sjogrens & hypothyroidism dx. I have lots of other chronic pain issues but these were the hardest to find out about. I've had spine and arthritis issues for decades. I was put on Cymbalta and for 9 mos it worked like a dream, but then came bad side effects so I'm now on gabapentin, tramadol (on severe days), and antidepressant & anxiety meds. Most of us are dealing with anxiety and depression, and many of us are on meds for it. I'm not able to cope without it. I was working and living a normal healthy life until 2007 when the pain started. I noticed brain fog and memory issues too. Then they found a pelvic mass in 2010 and I had to quit work to recuperate from the 5 in 1 surgical procedures it turned out to be. I'm not able to go back to work and my health has continued to deteriorate and add new dx yearly. Next Thursday I will undergo surgery on my stomach & esophagus to help alleviate gerd and help the Barrett's Esophagus I've developed. And today my Ortho doc ordered an MRI on my neck due to continued weakening in my right arm. I also have to be at the hospital for a test on my adrenal glands tomorrow because my cortisol is almost nonexistent. It's times like this that my stress hits the roof. But I can always come here, whether from stress, pain, depression, or just to know I'm not alone, and there's always someone to talk to our even make me laugh. There are so many to support each of us in this community. And I've learned a lot, tried new things like vitamin D & magnesium for my pain; its helped some. I also exercise when I can, walking and stretching, to stay limber, and I'm trying to eat healthier, without snack sets, & fast foods. Just know that even if we don't have answers for you, we will always be here for you. And try not to be afraid of all meds. Trust me when I say I have an allergy list two pages long! I'm super sensitive, and from genetic tests found out benzodiazepines are not gold for me because I over metabolize them. I research all my meds on drugs.com, just to be aware of possible issues. Then if I notice something i let my doc know. I've had to stop or change meds several times this year. I'm allergic to most pain meds and many antidepressants. But I need something. I tried dealing with it all without meds, but it nearly put me back in a psych ward. Yes I've been there before and God willing, I will never go back. It wasn't a bad place, it helped me immensely! I just don't want to be away from family and home again. Hugs & prayers you will find the right meds and coping skills for you! 🙂💕🙏🌼

May 19, 2016 9:32 PM

Thank you so much for your response! I'm so sorry for all of your medical issues and I'll be praying for you. Sometimes I wonder if the depression/anxiety causes the pain or visa versa. I wonder did i do this to myself by letting myself get so depressed for so long. I do need to find better coping skills other than sleeping. But most days it's all I can do to take a shower. Since being diagnosed I've tried to pay closer attention to my stressors but it's things like work and family. Things I can't just cut out of my life. I was reading an article today about a woman who claims to have cured her fibro naturally with diet, exercise, herbs, and meditation. The only problem is I don't feel hopeful that a doctor would help me figure it all out in detail. And my brain stays so foggy sometimes I feel like I can't carry on a conversation. I've been on several antidepressants over the last 14 years and none have worked. They seem to work for a few months and then I'm back down again. I had a very bad experience with Effexor. I don't feel like I've been the same person since taking that drug. The side effects were intense. Ive been kind of paranoid about meds ever since then. I worry what it's doing to my brain and the rest of my body. Anyways it is nice to be able to come here and vent a little. I feel kinda bad dealing with what I'm dealing with when other people here like yourself are dealing with so much more. Prayers going up for you 🙏

May 19, 2016 9:41 PM

Not everyone has the same reactions to medication. The people (that I know personally) that were able to tolerate the first two hellish weeks have had great improvement in their symptoms. I would start low dose and slow but don't rule out anything that might actually work. As a side note a possible side effect of aspirin is headache funny how it all works. Good luck with whatever you decide.

May 20, 2016 6:57 AM

Hopefulbluefeet,. It sounds like I have a lot, and compared to some I do. But there are others on here who have a lot more to deal with than I do. I feel blessed finding this community. I've tried multiple antidepressants, & I can't take cymbalta, effexor, remeron, or many of the standard meds for depression. I'm on an old antidepressant called Nortriptyline because it doesn't give me the side effects other meds do. I had many reactions to many meds. But not all meds are the same. Try to get on a daily schedule but do it a step at a time. Take it one day at a time, one step at a time. Having a routine may help you. You can't change others. If you know they are triggers, walk away before you left them get to you. Be willing try others, as a first step. You may not needed it forever, but even if you do, there is no shame in it. I hope you will get under a doctor who can help you. Since you prefer a more natural approach, look for a doctor who uses holistic meds& treatment methods. Good luck! Hugs& prayers! 🙂💕🙏🌼

May 20, 2016 10:08 AM

LOL... Wow Flappsy, so much for the "short" version!!! Oh my long lost twin, I cringe every time I read all of your issues knowing how many I share with you. It's amazing we can get up out of bed in the morning. But, we're strong and we all have each other and it makes life all the better to know that we are not alone in our struggle. {{{Hugs}}}💕🙏🏻🌻😊

May 20, 2016 12:01 PM

Well geez, AlwayZ, we are taking a lifetime of half a century plus! Lol 😉

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