I'm new here...

[MegMiDa]

Hi everyone--

I'm new here, and somewhat newly diagnosed (October 2015). I have been really struggling lately, so I am on the search for advice, camaraderie and words of encouragement.

Last year,  I completely lost my hearing over the span of 4 months. It was diagnosed as an autoimmune disease. In addition to deafness, I was experience vertigo, exhaustion, joint pain, etc. I was sent to a rheumatologist who ordered more testing. I was finally diagnosed with RA and started on prednisone and methotrexate. I responded well for a few months. I felt almost "normal". (I had cochlear implant surgery, so my deafness is not a factor any more.) Due to an insurance mix-up, I was off methotrexate for about a month and a half. I've been back on the methotrexate for 2 months, but I just can't seem to feel better: pain, exhaustion, nausea, dizziness, brain fog, uncoordination, etc.

I teach full time, in addition course work and classes for my (eventual) PhD. This "ickiness" has got to stop! I don't know how much longer I can keep up with my duties, while feeling like this. I've been trying to take OTC arthritis medication as suggested by my rheumatologist, but they've been bothering my already upset stomach. I  have an appointment with my rheumatologist in 3 weeks, but right now, that seems like an eternity away.

I'd welcome any and all ideas, thoughts, or even just understanding. It is hard to describe how awful I feel to others who don't know/understand.

Thanks.

Meg

[SimoneHU HealthUnlocked]

Welcome to the community MegMiDa. Thank you so much for joining and quickly sharing your experience!! Please let us know how the rheumatologist appointment goes

[zipper5321]

Hi Meg, I'm relatively new to this forum as well.  So sorry that you are suffering...I feel your pain!  I've suffered RA symptoms since Oct 2014 and trying my best to find the right combination of therapy.  At first I wanted a quick fix all medication from my rheumy and after several months I didn't feel the relief and in fact was getting worse...I felt a bit of desperation and helpless.  I began to search and research all that I can about RA and spoke to others suffering RA and realized I'm not just limited to drugs to helping me. I know the meds can take awhile to slowly kick in, so in the meantime I am trying all sorts of ways to help myself get better....and very slowly I am getting better.  Sometimes it's 2 steps forward and 1 step or 3 step back.  But I know I can't just sit still and watch this disease take over, I needed to fight this!   My first step was to learn proper nutrition, knowing what I was going to put in my body can either help or hurt it.  So I questioned every food that was going in.  I started a journal and indicated the results.  Next, taking the right supplements and making sure I'm hydrated.  I've taken up more exercise (signed up for a monthly gym membership) so that when I feel remotely stable I would take yoga once a week and add some light cardio on the elliptical to strengthen my heart.  I kept close watch of my heart rate and blood pressure so I wasn't overdoing it.  I looked for natural stress relievers (including massages, getting realigned by a chiropractor, meditation and soon to try acupuncture) and through prayer support (which really is my most effective therapy) as I built a stronger spirit I wasn't as sad or in self pity mode that often!  I work as a hair and makeup artist so i stand a lot and use my hands so i've had to change up my habits at work.  I take more breaks and assign others to do a bulk of the work as I focus on the main person.  Sure I get paid less but for now I need to make my health a priority!   Anyways I hope this encourages you!  I really hope the best for you and that you don't give up or give in to this disease!   

[MegMiDa in reply to zipper5321]

Thanks for the encouragement! I'm working on getting a medical "excuse" that will allow me to type my exams instead of hand write them for school. It has been a really hard and humbling thing to admit, especially since I already use an ASL interpreter. Your words about changing your duties, and accepting what you can and cannot do really did help.

I'm pretty stubborn, so there's no giving up. Just feeling a little discouraged in the "chronic" part of this "chronic illness". We'll make it through!

Thanks again.

[Juliev320 in reply to zipper5321]

I would like to know what you did for diet and supplements.  Wish there was a class to take on this.  Are you on any meds?  How do you feel?  Are your tests better.  Take care

[MonicaVaz]

Hi., my name is Monica and I was diagnosed with RA in 1995.  I want you to kow you realy have to take control of your disease and treatment.

It sounds like your in the middle of a flare up. I would start writting on a tablet how you feel when you wake up in the morning, how much pain, stiffness , how long does it last i.e. 1-2 hours etc.

I would see my Rhuematologist monthly until my flare is under control. Get your Rhuematologist to prescribe a biologic for you and an anti inflammatory and a pain med .  Remecaid is a good start. It is an infussion takes about an hour -two hours. I wrnt into remissiob a number of years ago for about 5years. Now I am a non responder I went off the drug due to lack of insurance and am now a non responder.

I had to leave my career about 15 years ago and have gone on disability.  My RA is severe unfortunately I have 3 forms of arthritis .

WellvI hope this helps you..good luck,

[Juliev320]

Being a retired teacher, I feel your pain.  I can't imagine teaching on my bad days. Call and get another appointment or second opinion sooner.  They may need to change or add a different drug.  At least talk to the nurse.  Let us know how,you are doing.  Take care.  

I used to have a plastic crab on my desk.  If the kids walked in and I was holding it they knew I was crabby that day!  Kids could use it too!

[MegMiDa]

Oooo. I like the crab idea! Ha! Considering I teach high school girls, there's ALWAYS some one crabby. I can usually power through the day, but when 3:00pm hits I'm toast. It is really frustrating to LOVE teaching and to feel so limited. I know that I have a tight schedule and do a lot, so maybe I'm to blame for the continued ickiness. But, I really struggle with the thought of giving it all up. I've fought so hard to be where I am--full-time teacher and PhD student--fought through deafness, illness, etc. I really struggle with fighting through this as well.

My appointment with my Rheumatologist got moved back a week. Though, she upped my prednisone. It isn't doing too much. Hopefully, when I finally see her this week (Friday) we can discuss what the next step is. I'm really hoping there's something else to try! I've heard of the biologics, but I wasn't sure how long I needed to be on methotrexate for them to be approved by insurance. I guess we'll see. I've been trying Tyelnol Arthritis, but taking so much of it bothers my stomach.

Thanks for the thoughts everyone. Sorry for complaining so much! Stay tuned...

[kchris]

Sounds like you are having a really tough time. When I was first diagnosed 5 years ago, I was taking methotrexate with no relief, I was working full-time and it took every ounce of strength I had to get through the day. I finally took a medical leave of absence which gave my body time to rest and time to get on the right combo of drugs. We stopped methotrexate and I know take Humira once a week and daily prednisone and celebrex.