Not treating Rheumatoid Arthritis

By Mikaela Wednesday, December 26, 2007

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I've been living with Rheumatoid Arthritis for 5 years now and I have not been treating symptoms properly. I'm 35 years old and currently not on any medication and I'm losing my hair and my right pointer finger is constantly swollen to the point where I can't bend it all the way down anymore. My right ankle is constantly in pain and I think it is now deformed because my foot is no longer aligned straight. My eyes are always red even after taking Restasis and they burn and tears will not form. I notice that I can go at least 2 days without eating anything because I don't have an appetite anymore. My mouth is constantly dry and it's embarrasing because sometimes it seems like it foaming. My hair is thining all around the perimiter of my head. Up top, on the side and even in the middle of my head I'm noticing a lot of breakage. I am currently wearing a weave to hide to breakage and my natural hair is always wraped underneath a wig cap with ventilation and when I go back to the hair dresser I hope that my hair has grown but it just seems to be broken off more. I am afraid to seek a rheumatologist's advise because I don't want to hear the outcome. About 3 years ago I was taking prednisone and Methrothexate but then I took myself off it which was extremely dangerous because I started to develope the moon face and gain an astronomical amount of weight. I weighed up to 170 lbs when I was only 133 lbs. Since then I am now 142 and my weight is constantly decreasing. I had a full head of hair, what do I do to get my regular lifestyle back on track? What do I do to stop my eyes from becoming embarrasingly red, my mouth to cease being dry, to get my hair back and to hold and write with a pen again normally? WHAT DO I DO? I HATE HAVING RHEUMATOID ARTHRITIS? I CRY EVERYDAY! HELP!

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ANNIE

12/27/07 3:26pm

hi Mikaela, Ive had ra since 91. my hands and feet are kinda twisted, but i keep walking/working. i type everyday.dont't let this disease destroy you. get to a doctor and most of all pray.god works through them.i have those days when i want to give up but then i realize, who is going to care for me. So I motivate myself becuase it has to get better. by the way Iam 51 yrs young

Angie

12/27/07 3:54pm

Mikaela,

I gained 20 lbs from taking Mtrx for only 4 month back in 2002. In 2006, I also gained 30 lbs immediately when going Prednisone. My face became so large that many people have not recognized me. I weigh 196 and am very unhappy about it.

During the first 4 1/2 years of my disease I was misdiagnoised and didn't receive anything but Celebrex so my disease has become rampant. You can't retreat, you have to face this ugly monster and find a drug therapy (Biologic) to control it. If you wait too long, you may respond to them.

I probably hold the record for crying the most. When the pain reaches that point where I can't handle it anymore I have a melt-down. My co-workers have heard me cry through the walls many times.

My Rheumatologist told me 2 years ago that he "was treating me for 10 years down the road". My great aunt spent the last 20 years of her life in a wheelchair because of this disease. We are fortunate that there are many new drug therapies that can keep us out of that wheelchair.

Don't give in! Go to another doctor and get treatment now. We can get our lives back!

Angie

Renee

12/29/07 1:25am

I know what you are feeling but you have to go to the doctor. I have had psoriasis since I was 8 yrs old now I am 42. First it started in my ankles then knees then my hands. I realized something was terribly wrong when my hands became swollen and I dropped a item out of my china cabinet, then a week later I had a high fever and went to the emergency room. Went to a Rhu doctor they have put me on methotrexate, pain pills and sleeping pills (getting some sleep is better if you are not sleeping well). But I know the drug is hard just took 8m about 4 hours ago it is awful. and no one understands but just when you get down pull out your bible and say a prayer. I ask god to not let this consume my life. My kids help me keep going and this sight helps to know I am not crazy. So Monday make a appointment and you have the strength to face it.Please dont wait. God Bless

Angel

11/16/09 12:07pm

Thank-you for your post.

Im pretty much in the same situtation. Ive been dxs now with ra and fibromyalgia for about 3 years. I have tried methotrexate,planquenil, and lastly arava back in Feb. Arava made me sick, I was broke out in a horrible rash...they were more like blisters that would break open and bleed. I was givn steriods to try to help with the discomfort but nothing worked. It took a full week to get that stuff out of my system. I was miserable. Since my allergic reaction I have avoided any major meds for ra. My current cocktail consist only of meds to help me try to tolerate my pain and discomfort. I have questioned in the past whether or not I really have ra. I am stiff in the mornings..but I dont think to the extent I hear others talk about. My problem is major fatigue....and joint pain and swelling. Just recently my elbows have began to hurt...even if Im doing nothing. My hands especially my right seems as if its about to get stuck. I find myself very depressed over the fact that its hard for me to do simple things...such as cooking dinner...doing laundry...mopping the floor. Im beginning to tell myself..."you do have ra and you need to do something about it before it gets worse." Which would be my advice to you. I know its hard...and their are so many meds for ra it seems confusing. I hear many people state they have had good luck with biologics...which is probably my next step. Its scary...but you get to the point you know things are getting worse and you need to do something. I wish you the best of luck and hope both of us find strength to move forward and recognize that with treatment things will hopefully be better.

Ellen Galo

11/16/09 4:26pm

Angel - I'm wondering if the rash was shingles. It looks like I've come down with that, and there is a rash of blisters that can weep or bleed before they crust and scab. The pain from that can be horrible, worse than some of the RA (Nerve pain).

I know what you all mean by questioning, I've done that too. But joint pain and swelling is almost undoubtedly some kind of arthritis, be it infectious or hereditary in origin. The pain and stress can lead further on to fibromyalgia, which is a stressed out nervous system making things worse. So - as crazy as it sounds, whatever you can do to destress helps both the disease, the pain, and you. Sleep is very necessary. I've had a lot of trouble with that too. I try to avoid taking too many drugs. I am on a biologic, which is good because my stomach can't take any more NSAIDS. There are some supplements which helps some people (turmeric, yucca I'm using), some dietary changes help some people (not the same changes work for everyone - but that's a suggestion to take a look and see if there's anything you can connect to worse pain/swelling). This site has a lot of information, and so does the Arthritis Foundation.

They also have courses like, "Taking charge of your arthritis" or "self-management" because it's been documented that the more the patient FEELS in charge, the better off they become. This is not a time to hide in the closet or slavishly follow the doctor's orders when it's not working.... See Lene Anderson's posts about having a good relationship with your rheumatologist... and lots more. Keep going ...every time I think I've hit a plateau, something changes for better or worse. Every time I have to give up a med - something else comes to mind to help. Or I'm able to get through a period of time until I find something else. There can always be HOPE!

Not treating Rheumatoid Arthritis

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