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Best Way To Explain RA To Family Members?

Best Way To Explain RA To Family Members?

I was diagnosed with Seronegative RA In November 2018. I just turned 29 in February. Positive ANA and have been on Plaquenil, Prednisone, and now highest dose of Methotrexate. Nothing has seemed to help and I am getting progressively worse. All of my bloodwork comes back negative for RF, CCP. My Mother has had RA for the last 27 years, and she was Seronegative as well early on and is now Seropositive. I have her support in this because she knows firsthand the difficulties. My Husband seems to… read more

A myRAteam Member said:

I'm another RA pt w/significant spinal arthritis. I'm a PA that became disabled in 2006, d/t my disease. I've learned so much more as a pt in re to the many additional organ systems affected by RA, than I did in school.
I am 60 but at 45 when my sxs hit I dealt w/the sweating, joints/muscles just hurting & often burning. I dreaded waking up b/c my sxs were in my face every am & I was trying to raise my last 2 kiddos. Those days sucked.
Build a support system around you, keep reading all you can about RA & other similar dxs. If you aren't really content w/your provider then keep looking for the one that will make you feel like you're getting somewhere w/treatment. It will take a while for you to figure out what meds/supplements help vs hinder your progress.
Organ systems to not ignore are your adrenal glands & thyroid gland, responsible for many of your hormones producted. Ask your doc to check your estrogens, progesterone, testosterone, Vit D level, and ask for a full thyroid profile. I'm assuming your doc has already ruled out anemia as cause of fatigue.
Low levels of testosterone can really cause fatigue and delayed muscle recovery after exercise. It affects your drive to enjoy life too. Low levels of estrogens/progesterone can contribute to sweats, hot flashes, mood shifts, wt gain, etc..(ie nothing good!)
I tried oral HRT but nothing had worked for me like Hormone Pellet Therapy. Unfortunately Ins won't pay for pellets, go figure!
Anyway, hope something here helps. God bless you in your journey:)
Marcia.

posted over 2 years ago
A myRAteam Member said:

@A myRAteam Member.I too am battling with my eyes and always feel that there is something in them. I now have glaucoma so I have to go regularly for check ups.. every 3 months as they are deteriorating. He told me that the something in my eye is caused by a condition called Blepharitis and told me to clean along the lid, top and bottom very morning and evening with a pad of warm water. Since doing this, they seem to be watering less and that irritating "thing " in my eye is not happening quite so often. Maybe ask you're doc about it.

posted over 2 years ago
A myRAteam Member said:

Tough disease for people to find understand. I look 10 years younger than I am and act it. So when I'm in a flare or can't lift that bale, or...... They don't get it. Sometimes I feel like wearing a sign.

posted almost 3 years ago
A myRAteam Member said:

Boy oh boy do I know how you feel! I'm battling the same fight you are, my wife is a RN and is supportive of me, however most of her family think I'm freeloading off her, we have been together over 31yrs now. I have no problem with losing people who I thought cared about me, but really dont care at all. It just makes family functions extremely difficult to deal with!!! Stay strong!

posted almost 3 years ago
A myRAteam Member said:

They say they understand, we will get through this and it will be ok. But when your down it is like what is wrong with you? Why are you so tried? It is like a revolving door most of the time. Most days I stay nothing. The thought of having to depend on anyone kills me.

posted almost 3 years ago
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