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newbie...frustrated and ready to give up

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Rheumatoid Arthritis
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Posted 1/23/2010 1:20 PM (GMT 0)
hello everyone, i am new here, although not new to RA. i am a 32 year old female and i was diagnosed in 2005. i have been on methotrexate and plaquenil since then. my symptoms were under control for a while and i only experienced serious flares a few times a year. but recently it has gotten worse. not like a flare, just a constant aching and cracking that is making me miserable! my symptoms are definitely not as severe as some, and at times i feel like i shouldn't even complain because other people suffer so much more.
be that as it may, i am really tired of just "dealing" with this pain. it has always been mostly in my arms (i also suffer from carpal tunnel which wakes me 6 or 7 times a night) but over the past 6 months or so it has started in my back and neck. i am currently looking for a new rheumatologist because i feel like i am at a stand still with my current, very conservative doctor. i think i have just been complacent the last four years and i have not been very assertive in looking for other methods to ease my pain. i have been reading a lot lately about diets, fasting and testing certain foods to see if they aggravate your symptoms. i am wondering if anyone here has experience with alternative treatments or has any suggestions.
i guess i finally realized that i need to let out my frustrations and talk to other people who suffer with this disease. hope to hear from somebody...
Posted 1/24/2010 6:26 AM (GMT 0)

Welcome to HW and the RA forum Anniesmilewinkgrin

Dont be so hard on yourself by down playing your pain - pain is pain! And when it is constant it can be debillitating - well it does my head in:-)

A new Rheumy sounds like a good idea. Do a search on the other maintenance meds there are out there for RA and dont forget to make a list/diary of symptoms to take with you. I always end up forgetting to ask something if I dont have my list with meeyes

I take calcium with vitamin D and was taking fish oil till my Crohn's Disease flared, I must re-introduce it back into my 'pill regime'.

Good luck with your Rheumy search - let us know how that goes.

Take care

Jo

Posted 1/24/2010 8:39 PM (GMT 0)
There are lots of diets out there to try. I tried the low acid diet for awhile, where you cut out acidic foods but increase the natural anti inflammatories, I didn't notice much difference but friends swear by it. I seem to have a particularly aggressive form of arthritis so it may be worth going to a naturapath and getting a diet organised.

I also take glucosomine and fish oil. My rheumy told me to take 14 capsules of fish oil a day but my naturopath has sourced a stronger capsule for me so I only take 3 of those. I stopped for awhile being sick of swallowing capsules and I instantly noticed the difference within a few days. I met a man recently who's had RA for 15 years and thats all he is on, fish oil! I'm also going to try acupuncture once kids are back at school etc.

As for rheumy's you have to find one you trust, it's your life on the line, your health with the ever present threat of permanent disability, I've met people with damaged hands from poorly managed RA. You need to find a good rheumy.


Carpel tunnel can be relieved by using splints at night, really cuts down the numbness. I use mine if I'm on the computer or driving as well. I also had cortisone injections which worked but were painful. Going on humira really settled my carpel tunnel (now I have tenosynovitis!) Always something with this disease! But my rheumy was saying the surgery for carpel tunnel is minor and has great results. You sound as if its time for another med to be thrown into the mix but try the fish oil. It can't hurt, have them with a meal and spaced out during the day.

Goodluck, golitho
Posted 1/24/2010 8:56 PM (GMT 0)
How do you handle the Methotrexate?  It scares me and I have only had my first shot.  I have huge sensitivities to a lot of meds.

I am also frustrated as I dealt with pain for so long.  I can barely get out of bed.  I have spinal pain and the whole cracking of joints they say I have undifferentiated spondyloarthropathy.  Killer name huh?  I don't know what is out there other than pain killers and Lidoderm patches which I wish I could plaster all over my body but you can't.  I just bent my arm and my elbow cracked. Lovely.  I wish there were answers I know this destroyed my career.  That drug Methotrexate is causing me to itch.  No rash yet or I would be out the door to the hospital.  I have given up so many times but this is all we have while we are here.  We all must find a way to cope.  I think I will be looking for alternatives also.  I have a great rheumatologist but maybe there is hope in alternative treatments other than this medical profession we are blessed with.  I will be trying other sources in the near future.  I don't know what to do either.  I will keep your post handy and hopefully there are alternatives.  I will share what I come up with if anything.  At least I got a diagnosis after 22 years.  I had been grabbing at straws trying to figure out what was going on with me. I fought the pain until I could not fight anymore.  I think I made Advil a financial success story with all that medicine I took.  I think this is probably something that we all have to deal with in a positive fashion.  (Listen to me).  Remember, medicine is really still in it's infancy.  In 1918 they treated the flu with whisky.  Scarey!  1918 really was n't that long ago.  I suppose we have come a long way since then but we still have a long way to go.  This country just throws medicine at us to shut us up I believe.  In the meantime, all of my cartilage is being destroyed and every drug is a temporary fix and dangerous.  Hang in there.  Don't give up.  I live in Philadelphia where there are great sources of health care.  Maybe, just maybe I can find an answer.

Sincerely,

Blue Girl

Posted 1/25/2010 2:32 PM (GMT 0)
years ago the doctor put me on methotrexate and diclofinac. Had to stop taking that. Then they tried Celebrex and I was allergic. For years I suffered and only took alleve twice a day to take the edge off.
Went back to the rheumy a year and a half ago as I couldn't take the constant pain anymore plus my hands were getting really deformed.
I've been on Humira since then and it's been a miracle. I can walk w/o pain most of the time now and most days I don't even think about it anymore. Unfortunately it can't undo the damage already done and I should have gone back sooner. You might want to ask about some of the new TNF drugs that are available. I know they have scary side effects, but so does aspirin if you're allergic to it. It becomes a question of quality of life.

good luck and keep us update,

Alicat
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