Life is Hard

By opiesmom

1 min read

Last updated: October 2022

I was diagnosed about a year ago and my life has changed dramatically.

RA challenges

I used to walk 5 miles a day and ride horses every weekend.

That is no longer the case ... with this diagnosis, I feel as though I lost myself.

I love my doctor and he is very sympathetic but no one else understands the fatigue and pain I am going through.

I have lost 14 lbs ... down to 76lbs and can barely function.

I don't see this going on much longer... anyone else feel they would be better off dead? I am so tired.

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RHall Admin
Hi <inline-mention username="opiesmom" user-id="6143045"/> . First I want to share that I am so sorry that you are going through this right now. I want to share that while it may seem that things will never get better, please trust that there are *so many* in our RA community who have felt defeated and hopeless, but have managed to find a strategy that works for them to manage their RA. Based on your current symptoms, I would suggest that you contact your doctor *immediately* and share with them what you're experiencing, especially with the significant weight loss. With RA, while weight challenges (both weight gain and weight loss) are common, it really seems like in your case an urgent call to your doctor is the best next step you can take. Please remember that while there currently isn't a cure for RA, you CAN live a life that is fulfilling. - Reggie, team member
1. opiesmom
 <inline-mention username="RHall" user-id="3226625"/> Thank you
Richard Faust Admin
Hi <inline-mention username="opiesmom" user-id="6143045"/>. First, let me echo <inline-mention username="RHall" user-id="3226625"/> in saying it is important for you to speak with your doctor, particularly to make sure that there are no other issues contributing to your symptoms. Second, I want to stress, like Reggie, that hope is real. My wife, Kelly Mack (a contributor here), was diagnosed with a severe form of juvenile RA at age two, over 40 years ago - before modern treatments, so she ended up with pretty severe damage. She also went to college, graduate school, has a fulfilling career, and a happy life. On more than one occasion we have discussed with her rheumatologist the hope that children diagnosed today will not have the same damage due to the treatment advances and several years ago she started a treatment that brought her inflammation numbers into the normal range. Finding an effective treatment can take time and be a frustrating process, but there are now many options and things can definitely get better. Please know that people here understand and that this community is here for you. Wishing you the best and please feel free, if you like, to keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)
opiesmom
Thank you for you concern, they are checking for other things, my symptoms became much worse after having Covid last December. Our main concern right now is trying to stabilize my weight. I will keep you posted
MRL.
I'm sorry. Please know you are not alone. I was diagnosed a year and a half ago. I'm not her anymore.
Orange21
Reach out to your friends, write in a diary how your day is, read a book but most important is that you are here on earth to enjoy the good things in life.
mseelhoff
First off, I have been riding show jumpers my whole life. I was diagnosed at 28. I walk 4 miles everyday. Rain or shine. Getting on a good biological like Enbrel or Actemra, will restore your ability to be 100% normal. I am 54, riding 1 meter jumpers. If you can’t do normal things your doctor isn’t doing his/her job. You have to advocate for yourself or they will assume your fine. Lessons I have learned!
1. Lori Foster Admin
 How awesome that medication is helping, <inline-mention username="mseelhoff" user-id="3192364"/>. Unfortunately, for some people, biologics are either not effective or the side effects are too much. Others are allergic to them or have other health conditions that prevent them from taking them. Hopefully, someday, they will find medication that helps everyone. In the meantime, I am thrilled you are able to continue pursuing your passions and I hope your medications continue to help. You are so right about advocating for yourself. That's great advice. Thanks for weighing in. Wishing you the best. - Lori (Team Member)
opiesmom
Insurance won't cover Enbrel til next year also I have heart issues along with..don't knock my doctor when you don't know the details.. Weighing 75lbs doesn't leave a lot of energy...happy for yo
1. Lori Foster Admin
 I hope you are eventually able to get on Enbrel and that it helps, <inline-mention username="opiesmom" user-id="6143045"/>. Have you tried reaching out to the company for financial assistance for now? They will often cover part or all of the cost for those who can't afford it. Sending lots of gentle hugs and the best of all wishes your way. - Lori (Team Member)
CommunityMember3140
I ran into the same situation about 25 years ago. Paralyzing joint pain. Difficult off get of the bed to say the least. couldn't even open the door. A doctor's book I found in the local library claimed, all RA cases can be treated successfully with custom diet change that is specific to an individual. I tried that concept and fully recovered in less than a week. I cannot find that book anymore, it was at least 50 years old as of now. But there is another one by Dr. Giraud campbell along the same line that claims remission from RA within about a week. User testimonials overwhelmingly agree. There is one limitation though. Patients who have been treated extensively with allopathic drugs (which are just painkillers) will not benefit though he does record such a case which experienced significant pain reduction after a month. The process involves, one day of colon cleansing and fasting to get rid of excess microbes in the gut. Then it is followed by a simple raw vegetable diet followed by slow introduction of other foods to find which are RA triggers. I think this is the first thing anyone who recently experienced RA before going into the never never land of allopathic treatments which do not cure but mask pain at the expense of potentially deadly side effects. The book title is "A Doctor's Proven New Home cure for Arthritis" by Giraud Campbell. A used book can often be found for about $5 to $8. other helpful books are: "Healing Arthritis" by Dr. Susan Blum. Very scientific but not simple. "Conquering Arthritis" by Barbara Allan. Non Doctor but based on thorough research.
1. Lori Foster Admin
 Hi <inline-mention username="CommunityMember3140" user-id="5528970"/>. I am thrilled to hear dietary changes have helped. For some people, dietary changes can make a huge difference while they make little or no difference for others. But there is certainly no harm in trying. Many people have success with doctors of functional medicine. They use medications when necessary, but they also take a wholistic approach, which includes overseeing dietary changes. I hope you continue to see relief. Wishing you the best. - Lori (Team Member)

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