Moms Living With Rheumatoid Arthritis

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Comment by Heather Schuetz on October 26, 2009 at 7:29pm

My story is pretty crazy when I go back and think how it all happened, it is also very long so bare with me :). My pain and swelling started in my left wrist. It felt like I had fallen on it and fractured it or something, it hurt so bad. It then went into my right wrist as well. I am a hairstylist, so I couldn't go very long with the pain, and I thought I might have carpel tunnel because it is so common for hairstylist to get it. I waited about two weeks and made a doc appointment to get them checked out. about a week before my Doc appointment my left knee started to hurt and swell up. I didn't think anything of it though, I honestly thought maybe I ran into the side of a table or something and it was just hurting from something like that. When I went to the doc he checked out my wrists and said he didn't think it was a classic case of carpel tunnel but he gave me a steriod shot anyway to see if it would help and told me to come back in a week if the pain didn't get better. I got the shot straight into my carpel tunnel and another in my left wrist, which he thought had tendonitus because it wasn't going up my elbow....yet lol. I didn't mention my leg, because again i didn't think it was anything to do with my arms. well about a week after the steroid shots in my wrists, my other knee had swelled up as well. The pain in my wrists did not go away. I made an appointment with an IM doc, but had to wait about two weeks to get in. while I was waiting for the appointment, the swelling in my knees got so bad that I couldn't straighten my legs, and about a week before my doc appointment my ankles were so swollen and in pain that, added to the swelling and pain in my knees, I couldn't walk. My mother-in-law then made me go to urgent care near my house. He thought I had Lupus or RA, but tested me for everything known to man anyway. he didn't diagnose me then because he knew I was going to another doctor in a week, but he gave me naproxen and pain pills to take while I waited to go to the doc, to try and get some of the swelling down. I then went to my IM doc a week later. The swelling and pain was still very bad and was by then in my wrists, knuckles, elbows, shoulders, hips, knees, and ankles. I was so swollen it was rediculous. She believed I had RA and refered me to a Rheumatologist and also perscribed Prednizone, and more pain killers, and told me to stop taking the naproxen. The Steroids worked like magic! In two days I had no swelling anywhere. I still had a little pain, but no swelling. By now I was very confused why everyone was making such a big deal of me having RA, because I was uneducated and thought it was just arthritis, and nothing to be so concerned about. I then started looking online and was upset about what the doctors were saying I had. I was scared, because I didn't know anyone that has had this, but the symptoms were EXACTLY what was going on with my body. It took another two weeks to get to the rheumi. He diagnosed me with Rhuematoid arthrits because of the documentation from my IM doc, and my physical test. I have not had one positive RA test yet! I have had very high sed rate, but negative RA testing. He belives because of my swelling, pain, and sever fatigue that i have RA. I am currently taking 6 pills a week of Methotrexate, 4 pills a day of methoprednizone ( I believe that is what it is called, don't want to walk to the kitchen to get my bottle), and folic acid of course. I am lowering my dosage of steroid every five days, and if i swell i have to up the dosage, so slowley but surley I'm getting off of it. It is very hard to get used to everything, but I'm doing it. My son keeps me very busy, which is good and bad lol. The pain has gone into my hands pretty bad, so I work a lot less, but luckily I work for myself, and it is fine with all my clients so I'm lucky to have such a great support system. I hope I answered your questions Mary. How is your fatigue? That is what I seem to be having the most trouble with. Mine comes on so suddenly, and my whole body just goes limp. I feel like my muscles are like jello. Has your doc told you anything to help that? Mine doesn't seem to have any help in that area.

Comment by Lisa Copen on October 26, 2009 at 8:37am

I am having lefthand surgery 11/4 including my first joint replacements and then a cast for 6 weeks. I need prayer! My shoulders are eroded and need replaced themselves, so from experience I know the cast for 2 weeks I had previously was pretty bad and sent me into a horrible flare.

On the flip side, I am about 60% done writing a book for Christian moms with chronic illness. It covers practical topics as well as the spiritual when it comes to guilt, teaching our kids life skills, how to ask for help (going to try to take my own advice soon on that one). If you'd like to share your stories and answer questions, etc. please sign up to receive them with our yahoogroup. Send a blank email to
Christian-Moms-w-illness-Book-Team-subscribe@yahoogroups.com and feel free to invite others to join too!

Thanks, friends!
FYI: am 41 and have had RA since 24,. I am married with a son of 6.

Comment by Lana on October 25, 2009 at 8:35pm

Mary - has your rheum discussed combination treatment. with combination treatment, there is a higher chance of remission. come by and visit my blog where you will found a complete list of RA bloggers who offer support and advice through experince. http://ohboy-boys.blogspot.com/

Comment by Mary on October 12, 2009 at 8:22am

Wow, Heather. I can't imagine what you must be going thru, with a baby and your job, with all of that pain. It must be a complete struggle for you. I'm sure that your little one helps to keep you going, but at the same time, it's frustrating because you can't do the things that you used to do without all of that pain. I started with pain in my hands and fingers back in the spring, and went to the doctor to get checked after I had swelling. Of course my tests all came back negative, so he diagnosed me as having Sero-negative RA. Now, I have pain and swelling in my feet as well. We're still trying to get a medicine regimen going. Currently I am on Naproxen and Plaquenil. Did your pain gradually go throughout your body, or was it all at the same time in different areas when it started? I can't believe how many places you have it! How long until you went to the doctor?

Comment by Heather Schuetz on October 10, 2009 at 5:38pm

Mary, It would be wonderful if we could help each other. I have read everything I could possibly read. I need someone that actually is going through the same thing to talk to.
I have it in pretty much every Joint. My knees are the worst, but I have it in the ankles, wrists, knuckles, hips, elbows, and shoulders. I'm am about a month out from getting diagnosed. I also just found out I was taking my meds wrong. Thought I was supposed to be only taking one methotrex a week, and I'm supposed to be taking 6. I'm so retarded. I'm almost off the steroids I had prescribed, which I'm happy about, but I've been in a bit of pain lately. I live in Colorado, and it is pretty cold right now, so I'm thinking maybe that's why I'm hurting as well.
How are you doing with your treatment?

Comment by Mary on October 3, 2009 at 6:05pm

Welcome, Heather. I would like to talk to someone who understands, too, so I know how you feel. Maybe we can help each other. Not much activity here in this group, though. Where is your RA?

Comment by Heather Schuetz on October 3, 2009 at 5:04pm

Hi everyone! I just recently became diagnosed with RA and was looking for a group of women who would understand what I was going through, for I have been feeling rather alone. I am a 25 year old hairstylist, and I have a 15 month old son. I am having a rather bad flare up added onto a horrible cold that I have had for about a week now. I really need to talk to people who understand that living with RA is a day to day struggle, so I'm very happy I found this group!

Comment by Lisa Copen on August 14, 2009 at 10:02am

Thank you soo much for the welcome and even the featured Twitter. I have had RA 16 years, since age 24. Never had remission. Last year ended up with the flesh eating virus on my ankle and was in hospital fo 1 week and so have been off Humera for 12 months this week. NOT fun... a whole new season. My 6 year old son keeps me going and I have a Christian organization I began in 96 for those with chronic illness, so I write, speak, basically get "obsessed" instead of "depressed" is what I say. But last week got the diagnosis of diabetes, largely due to prednisone and weight gain from prednisone! ugh! I had gained about 80 lbs and have lost 19 in last 19 weeks on Nutrisystems diabetic plan. Very slow, but working. But was doing it to AVOID diabetes so .... bummer! Glad to get to know you all soon!

Comment by Lana on August 14, 2009 at 6:18am

Welcome Lisa! Glad to have you here!

Comment by Lisa Copen on August 12, 2009 at 12:05pm

I am the founder of Invisible Illness Week (I have RA) and am honored to be hosting Grand Round 8/18/09, the largest medical blog carnival online.

I am looking for any blog topics related to living with an invisible illness, treating invisible illnesses, having a family member with one, caregiving, etc. Posts can be casual from a patient perspective, or more formal from a medical professional background.

Details are here: http://invisibleillnessweek.com/?p=1811

Submit here: http://tinyurl.com/nznvak

Deadline for carnival is 8/16, but we also have guest bloggers for our Invisible Illness Week web site. II Week is 9/14-20, 2009

If you can forward this on so we get some great submissions that would be so appreciated!

MY TWEET TO RT (you can copy and paste as is)

RT @invisibleillwk #Iiiwk09 NOW seeking submissions for Grand Rounds blog carnival on invisible illness http://tinyurl.com/nznvak

Lisa

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