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What Untreated Rheumatoid Arthritis Feels Like

When I wake up in the morning, my knees are swollen to almost twice their normal size. The first few steps are agonizing, more of a shuffle than actual steps. My shoulders ache constantly, as does my neck. Not an ache, really, more of a sense of someone grinding a hot poker into them. Both knees and both shoulders feel like wet bags of sand, and when I am lying flat it is difficult to raise my arms at all. My hands do not open or close all the way. Sometimes I can't hold onto things because they start shaking. I tried to pick-up a cupcake the other day and if my husband hadn't grabbed it I would have tossed it onto the floor. My neck cracks when and if I can move it. The burning pain goes from my shoulders across and up into the back of my head. I have bumps on the 2nd joints of my fingers, and lumps on the back of my wrists. I have huge rheumatoid nodules behind each ankle and on each elbow. The one on my right elbow is the size of a baseball. My toenails fall off, and sometimes my toes are numb. Underneath it all is this constant sort of electrical buzzing sensation, like you feel right before your leg wakes up after being asleep, except nothing wakes up. Trying to sleep is a joke, no matter what side I lay on, my shoulder screams in pain, and if I try to lay on my back my legs jump around and my neck hurts even worse. Most of the time my husband has to help me get off my chair and the toilet. I tried using a walker for this but it doesn't work either. Sometimes I am so exhausted from dealing with the pain, all I can do is cry. Today my legs were so bad that I ended up staying in bed just to give them a break.

I know it makes it worse to go up and down the stairs from my apartment, but sometimes there is no choice. Yesterday, a wonderful woman from the SSA called and helped me fill out disability papers over the phone. However I had to go in there and sign them, which meant a trip up and down the stairs when my legs were in no shape for it. But this lady was the first person since I lost my job to actually give me some hope of getting help, and I could not express my gratitude for her enough. I said that I understood most people get denied for SSDI the first time, but she said this is not true. If you do everything the way you are supposed to and follow the guidelines, there is no reason not to be approved. I guess it is up to the doctors now, and how they respond to the SSA regarding my conditions. I probably won't hear anything until February, but at least the process is started, and done the right way with her help. She was definitely an angel in disguise when I needed it most.

Two months ago before I lost my job, my RA was under control, and had been for many years. It is scary how fast it can take over your life when there is nothing fighting it. My family is watching me slowly die from this, and becoming basically helpless and useless. This is especially hard because I am the "strong" one, the one everyone comes to for answers, for support, and they are now having to do everything for me. I am putting my faith in God to get us all through this. He has never let us down before.
ColoGrama ColoGrama 56-60, F 4 Responses Nov 2, 2010

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Hi there,

Thank you for sharing your story on the forum.

I am a researcher starting to work in healthcare industry since last year. Slowly through the project that we work with RA, I have learned so much about how people with RA have suffered.

Now, I work for a consultant company called DeltaMV Knowledge Solutions (www. deltamv.com). We are working on a project called RA patient journey. To finish the project well, we need to talk to people who have been diagnosed with RA to understand what they have gone through. The result from the project will help us to write up recommendation on how to build a better support program for RA patients in Australia.

We are very much interested in your experiences if you live in Sydney, Adelaide, Brisbane, Perth or suburbs near these cities . This is a paid research. We will compensate your time for $100 in cash for an hour interview.

If you are interested please email me at 043 101 5330.

Thank you,

Trang Tran

I feel almost the same I was on meds for a while and quick takeing them. Thankin bout goin back to dr. to get back on them.

I feel for you and I want to say do not give up. Keep your faith in the Lord--I am a believer in miracles. I have RA, and neurological problems which so far has made medications prescribed to me for this disease impossible to take. Supplement wise, I take boswellia, Omega fish oil and tart cherry extract--these do seem to help some with inflammation. Tart cherry extract helps with pain--it may take several weeks to note improvement. For me personally, processed meats worsens my rheumatoid arthritis--greatly. I stick mostly to natural meat and unprocessed foods. Too much tomatoes also amplify my condition. You might experiment with certain foods, to see if any aggravate your RA. I see your post was some time ago--I hope you are faring better. You will be in my prayers.<br />
<br />
Isaiah 41:10

I too, feel your pain. Was on methotrexate, folic acid, prilosect, and diclofenic, (probably all spelled wrong). They DID work, but had a heart attack in Junem and Dr's suspected all the meds, including the thyroid medicine I was taking, had contributed to or agrivated my heart condition, I quit taking all the meds. Now just fish oil caps, and baby asprin every day. AND the arthritis has come back BIG time. Don't know what I'll try next. I took early retirement (I'm 62) on Dec 12th 2011. Don't know how I'll make out on SS money, but can't work. Guess I'll have to try for SS disability soon.

You can work on Social security (SSDI) not full time.