Between A Rock And A Hard Place

By MsFluttersBie Saturday, February 14, 2009

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You know that feeling of despair, when all your options suck equally! I have been treated for RA for over 20 years, and at this point I feel I have exhausted all treatment options. I remember being 12 and having a head ach and taking tylenol which didn't help, why would it when I have been taking 1000mg of naproxyn sodium since I was 6. I have taken Prednisone for years and do not want to go there again, it's too detremental to the internal organs. TNF blockers and immuno suppresants are out of the question, I would rather live in pain than die from something as simple as the Flu. Then there are Pain Pills and Opiates, Personally I like me, and with thoes kinds of pills I'm just not the Sweet Fun Loving person Everyone Loves so much. So What do you do when all your Options Suck? What do you do when you feel stuck on a hampster wheel of catch 22's?

The Answer to All My Problems!

Comments (4) | Add comment

amy's compassion

2/15/09 8:02am

I know you're feeling stuck but one thing you possess is an excellent sense of humor and a gift for expressing it on paper, even when the subject is something as sucky as RA. I can't offer any insight as far as meds go because I'm only on my third drug and you've got waaay more knowledge and experience with this disease than I do. But you're cool and I know you'll find a way.

MsFluttersBie

2/15/09 10:28am

Thank you so much! It brings me great joy to write and express myself. I am so thankful to have found this site, and all the wounderful people to relate to. I have always used humor to deflect the Pain, I am glad that, my sense of humor is what you noticed most. I think as far as my treatment I kinda have to take NSAIDS but want to stay away from the negative options, imuno suppresants and biologic agents. I try to focus on my mental health and finding this site is the biggest help for coping. The positive feedback really helps, you can't put a price on the boost that it gives you. I am hopefull that the US government will open up some treatment options that are at this time illegal, but HGH and Stem cells I think are viable options for repairing damage to the joints. I think that we need better options, atleast untill we fiqure out what causes this disease, then we can come up with a way to reverse it instead of kill it. It being the immune system of course. Well I would love to chat some more but must get up now and walk around for a while. Sincerly, Becky Sue P.L.U.R.

Lene Andersen, Health Guide

2/17/09 12:51pm

Having had RA for as long as you remember sucks. It does. I've had the blasted thing since I was 4 and 40 years later, it's still not my favourite thing in the world.

The thing is... with RA, you have to think long-term and that means acting to protect your joints from damage as much as you can because that helps to preserve your mobility and ability levels. The most effective way of doing that is immunosuppressant drugs. However, I checked out your profile and it based on your past experience with methotrexate and Enbrel, I can absolutely understand you not wanting to go that way again. However, I wonder what the risks are for you to have that kind of the extreme reaction again? What does your doctor say about it? I have heard of people who have had bad reactions to e.g., Enbrel and Remicade which seemed related to the fact that they couldn't tolerate the mouse cells, but later tried Humira (based in human cells), which has worked fine for them. It may be worth having a chat with your doctor about that, just to get information about your options.

There's only so much you can do to stay happy when you're in a lot of pain and when your RA is not being treated, you're likely to be in substantial pain. Finding a painkiller or anti-inflammatory that works for you with minimal side effects can be a bit of trial and error, as I'm sure you know and again, you may want to discuss options with your doctor. The goal is for you to be able to live your life with the RA on the back burner as much as possible and in order to do that you may want to reconsider your position on taking painkillers

There are alternative methods that can help you manage the pain and inflammation somewhat. Meditation and yoga can help and there is some evidence that the Mediterranean diet may reduce inflammation and a whole grains diet can work, as well. Supplements like vitamin D and cod liver oil may also help, as can home remedies like gin soaked raisins and tart cherries. Acupuncture and shiatsu massage can provide pain relief, as well. You may also want to consult a licensed naturopathic doctor for information about various herbal medicines. If you do look for a naturopath, be sure you find one that's properly licensed according to the law.

Ellen Galo

2/18/09 11:43am

Hi Becky SUe & Lene,

I'm glad Lene brought up diet. I found less meat helps me (especially staying away from RED meat - it's clinically proven). When I first was feeling stomach issues, (pre-RA dx), I began to eat less & less meat, and felt better and better. I went pretty much off meat altogether for about 2 years except for occasional cheat. Each time I regretted it (and myhusband could also tell the difference, and started warning me!) I think I did clear some junk out of my system and can now eat some. But red meat puts me in a blue funk (depression/irritiability) for a day. Green peppers give me hand pain within hours. Potatoes bother some people (knees, especially, apparently) but not me. Tomatoes I have only rarely, and then just a little raw. Rice, beans, tofu, and lots of veggies, both raw & cooked, help. Now I do seem to need some meat, but pretty much stick to chicken, turkey & fish (I LOVE FISH!). I can't take fish oil capsules however, - instant reflux and terrible taste/smell. But I probably have fish 1-2 times every week. My rheumatologist pooh-poohs the veg diet thing, but there are studies to back this up. In my opinion, the doctors should at least let you know what options are there.

I can't do a lot of exercise, but found after the ankle surgery, that the recumbent bike *(weight off the ankles) is a good option for me. Luckily I now have a second-hand one in my living room. it was getting too hard even to walk over to the fitness center on campus where I work, during lunch hour. Too long a walk! I feel so good after doing that! I can also do free hand/arm stretches while I'm pedaling and watch Discovery health channel *( my favorite ).

Hey, you guys are cheeering me up! It is so good to be able to share!

then of course, there is the possibility of antibiotic therapy which helps some, if you can find someone to prescribe it. There are a couple of websites with different rationales, The Road Back, the Marshall Protocol, www.cphhelp.org. I have spoken with two people using that therapy, and it works gradually, slowing for them, where other meds did not. I cannot speak for it from personal experience, however.

Best wishes - guess I better do some work now!

Ellen

Between A Rock And A Hard Place

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