What's left for me?

Gosh I am really glad you posted.   I've been thinking about you often, knowing that you were having such a hard time lately.  I am so very sorry for all your suffering. Geez Holly, if you didn't live so far away I would be on your doorstep with a vat of homemade soup and an offer to take your kids to the pool or something!  In lieu of that, I got nothing!  All I can say is I hear you and am thinking of you.  You really do a lot for this little community and have specifically been a great comfort to me.  If there is any form of "cyber-help" I can offer let me know, K?  

I am so sorry you are in pain.  Thoughts and prayers to you that your pain gets better.

I have had those days.  Stay strong.

Marly

Holly,

I am sorry to hear you are having so much pain.  I have been there believe me with a shoulder replacement and all.  Have you tried a pain management specialist?  I had one last year for a few months when i could barely move and had so much pain.  Good luck. I hope your pain lessens soon.

I went thr many pain meds and now im stuck on oxycodone and now theres nothing left for me to take

Hi Holly,

I'm so sorry you're going through a rough time.  When things are this bad, it's really hard to find hope, but you're right - the only way through this is to somehow, hold on to hope.

You don't have to live long with RA before you realize that there is the kind of pain that you suck up and the kind of pain that sends you to your rheumatologist in a full-fledged tantrum, demanding that they do something!  What you describe in this post is definitely the latter.  There is no living with pain that wants to make you scream, pain that keeps you up at night.  You have kids you need to take care of and that's next to impossible in the situation you're in now.  In this situation, your rheumatologist is the place to find hope - get there as soon as possible.  It is not reasonable to expect you to quietly grit your teeth through this much pain.

I wish you all the best.  Please keep us posted on how you're doing.

Lene

Holly:

I read your message and I feel your pain.  I am 65 years old and have had RA since I was 17.  I do continue to hope because, in the long course of my illness, I know it will get better,  I was where you are now in March.  My flare up followed a severe case of the flu.  I could not raise my arms(my husband had to help me dress) and I needed 3 tries to get up from a chair, then walked slowly with excruciating pain.  My hands were fists that I couldn't straighten until early evening.  I dreaded going to bed because the next day brought the same symptoms all over again.  I would stand in the shower for about 30 minutes before I could drag myself out the door to work ( yes, I have had a full-time job but just retired.)  Anyway, I called my Rheum for help.  She prescribed Darvocet to get me through the night so I could sleep.  She also started me on Methotrexate and a prednisone dose pack.  I was already on Plaquenil and Salsalate. The dose pack gave me about 2 weeks of relief and calmed down the shoulder pain so I could sleep without Darvocet (that stuff is addictive) and, within about 3 weeks the Methotrexate kicked in.  Though I am still not where I was before this flare, I felt good enough to go on vacation and have a good time  with the help of another prednisone dose pack for emergency.  My Rheum is my lifesaver, but she would not have known what a hard time I was having unless I told her.

Please have a serious talk with your doctor and, if he isn't willing or knowledgeable enough to help you, find someone else.  You have young children, as well as a husband who is rarely home to help.  I assume your doctor must know this, but if not, please tell him.  Believe me, there is plenty left in life for you!

I've never been on this site before - but i accidentally bumped in to this while looking for posts on massage and RA - and your post sounds so much like my life it stopped me in my tracks.  i wonder every day if my little girl and the one i have on the way - and my husband will ever know the real me again.  my husband misses me so much and my little girl was only one when i came down with this vicious illness that has stolen who i was.  i have tried acupuncture, chinese herbs, the food allergy route, P.H. balance etc. etc. and i've been getting medical massage for a year - and now the P.T. who i am seeing is telling me that massage is doing nothing but bringing blood flow in to all of my inflamed areas (neck to toes basically) and that it is counter productive in his mind.  i was wondering if any of you agree.  he is trying to help me strengthen my arms and shoulders and hands b/c i have so much wrist damage i am afraid i won't be able to lift my baby when i deliver her.  i have not gone on anything like humira or enbrel like my docs want me to when i deliver and i was wondering, Holly, and from the rest of you guys - if you still feel this desperate pain when you are on those heavy duty drugs - do you still have to take such heavy pain meds?  i don't know what to expect and i'm so scared of taking them but i am going to have to to be able to take care of my kids and become a wife again after two and a half years of trying to fight it naturally.  Holly - i've been at the hospital for all kinds of chest scans and blood work too - thinking i was having a heart attack and they've thought i had a blood clot in my leg when it was really some cyst related to RA - it just never stops.  My little girl keeps talking about what we are going to do when my "efferitis" is gone.  I was so glad to read the post about remission - b/c i have not had any relief other than the past few weeks of my pregnancy things have been relatively calm.  that is hope for me - the first i've had in a long time.  any comments on the massage or the possibilities for me after accepting the drugs?  thanks so much.  sharon

Holly I was just like you.  Got RA diagnosed when I was 26.  Yeah had horrible pain up until last 2 yrs. am now 59.

Keep on trying all the new medications.

If one is not working after 6 months or so or side effects are unbearable I suggest try the next New Medication.

Can't tell if at my now age the RA is abating a fair bit or it is the research I've done and the Vitamins and supplements, diet I am now following.

Get tests for Iron, VD,Thyroid, B12, Folate see if any are depleted.

Either supplement and/or diet to bring up your levels to acceptable.

What worked for me - I am not on any immuno suppressants now (they mostly all are) including Methotrexate. I had to find alternatives.

Omega 3 oil (Krill Oil) 1 - 2 caps per day or second day, evening primrose oil (omega 6) Clements liquid iron 10 mls per day with a glass of orange/pineapple juice for extra absorption.  Soils in Australia are very low in selenium - I try and buy USA Walnuts and other nuts with selenium. My thyroid was low (hypo) so every other day I put a dot of Betadeine (iodine) gel on my wrist and rub it in.  I take Vd supplements - every 3rd day in summer (when I get some sun on my skin) and every day over winter when I do not. A good Calcium citrate supplement with magnesium + manganese.  For my knees and shoulders I warm some extra virgin oil in the microwave and rub it in.  Crazy as it sounds this really works.  I get quite noticeable relief from pineapple fruit and juice (Bromelain).  Add ginger, cinnamon, tumeric to cooking.  Lots fresh fruit vegies, broccoli, sweet orange potato, brussel sprouts, celery (with peanut butter on stalks is great !) Keep coffee to 3 a day.

I have one 200gm low fruit yoghurt with Omega 3 and probiotics in it each day - keeps infections away and helps the gut.

Magnet knee brace and wrist bands.

Someone else has mentioned Hypnotherapy - I'd like to know more about this as I have wondered about it.