Hi there | Arthritis Information

Hey everyone,

This is a bit long... but if you wouldn't mind reading and helping I'd greatly appreciate it....

I'm new here. I haven't been diagnosed with anything yet, but I am very confused and don't know what to think right now.
I am a 21 year old female. I would consider myself very healthy. I run 3 miles almost every day, I lift, I play hockey, I work, and I go to school full time.
About mid-December, my right shoulder really started to bother me. It came on very quickly. One day it just started to hurt and by that night I could barely move my arm. After a day or so it was fine. It then began coming back every couple of days. It then started in my other shoulder and my left wrist. Both my chiropractor and physical therapist had no idea what it could be and I began to feel like a bit of a freak. I felt completely healthy otherwise.
I went like this for about a month. I stopped lifting completely as to avoid any flare ups.
Still, once in a while I would have flare ups... in my shoulders and my right elbow. Finally, one night I was in so much pain, I went into the emergency room. I could barely move my elbow. I was so frustrated, confused, worried, and tired of the pain. They gave me a shot of cortisone and ran some blood tests.
When the blood tests came back, my aso titer was very high. So they ruled it that all of this was from having strep. They gave me penicillin for 10 days to treat the strep. While I was on the penicillin, my joint pain was much better.
A couple of days after being done with the penicillin, the joint pain returned in my wrist. It was not as near as bad as before though. The doctor ran some more blood tests. My aso was still high but going down. She said this could take months to go down. My Rheumatoid Factor was at 21, which she said was high.

And now I'm being told to see a Rheumatologist. They can't see me for another month. So this is just leaving me very frustrated. I'm so scared and I just want some help... some answers. What does a RF of 21 mean? Could the fact that I had strep and I have a high aso titer affect my RF test? Could the fact that I was on penicillin affect my RF test? Aren't I too young to have RA?
I just want to be seen now and I want someone to help me now. This waiting is killing me. I'm supposed to be going on vacation in a week to go welcome my boyfriend home from Iraq. I'm supposed to be so happy and excited right now... and all I can do is cry and worry about my health.
Everyone keeps telling me not to worry about it. But I feel like it's so much easier for them to say that. They tell me they don't think I have it. Well then why is my RF high? And why do I have this joint pain?
I'd rather be realistic and know more about it. Is this something that will eventually cripple me? I keep on seeing pictures of people with RA really bad and I'm so afraid that eventually my hands will be deformed and I won't be normal. I'm so scared. I don't know what any of this means. Do all people with RA end up having deformities? Can this go away ever?

I'm sorry I'm so naive with all of this. I really would appreciate anyone's help though! I keep on getting every one's input and I just want to talk to someone who has RA. Please help me.

Thank you!
Welcome aboard, and sorry you had to find us. Keep posting and this is a great site to find your fellows in whatever journey your body is going to take. And you aren't too young as there are great posters in here who have had "it" all their lives.

I think we are all individual snowflakes with this "disease", and yours with be yours. Just remember that its your body, your life, your decisions, and you ultimately have to be as well-informed as possible and the best doctor on your team.

Drink lots of good filtered water, take vitamins and especially your calcium, get lots of rest, fish oil helps bring down inflammation. Take care ~~ Cathy PS my RA factor was 150, I have seen members in here post numbers as high as the 900s, and Pip, wasn't yours RA terribly high at diagnosis?
justsaynoemore2008-02-09 18:18:43Hello and welcome to AI, the one big thing you have to learn if you have this disease is PATIENCE as it is all about waiting, waiting for diagnoses, waiting for results, waiting for appointments, waiting for medicines to work, etc etc.... My RF was 496 and it was truly crippling, I can understand why you are preoccupied with the pain etc even though your boyfriend is coming home. Try the rest, good nutrition, gentle exercise etc and await your results, if you do have RA, this is a great place for support and information, best of luck, from Janie.

I can't help you, as I am new too, and haven't seen the rheumatologist yet (Monday), but your post made me sad for you and I felt I had to respond. You're too young to be worrying like this! I feel like I am giving you the advice I should be giving myself...which is, don't worry until there is something to worry about...go on your vacation... welcome your man home and be joyful that he IS home safe! It can be many things, and even if it's RA, if you read all the posts here, you will see there are many medications to help. Just take one day at a time. Concentrate on your boyfriend's homecoming right now, and deal with everything else after you see the doctor.

Hugs to you!

Lori

Hi Hab......welcome. I was diagnosed with RA last spring, but my symptoms started a year ago. Your story sounds similar to mine and I think it's wise to see a rheumatologist. Just so you know, since I was dx'd and started taking meds for RA, my life is pretty much back to normal. I was very active (running everyday, weight training) too and even though I've had to make some changes in my work out, it is still every bit as hard as it ever was. My point is that if you do have RA, it isn't an automatic sentence to wheelchair. The drugs they have now do much to prevent damage to your joints, so you could go through your whole life never becoming what you are imagining now. I know it's going to be hard to wait the whole month to see the doctor, but try not too worry to much. I can all but guarantee that it isn't as bad as you're thinking.

And when you see your boyfriend, give him a big hug from all of us military moms. Their are quite a few of us here. And keep us posted about what's going on, k?

You are lucky as hell that your RF is still only 21. We tend to go a lot higher. At diagnosis I was 353 and when I started AP (Antibiotic Protocol) I was 706.

Could the fact that I had strep and I have a high aso titer affect my RF test? Yes, I tested positive for the strep mycoplasma. My AP doc says we are definitely infection driven. Tetracyclines do not work as well as penicillians for strep. You need an AP doctor for this.

So they ruled it that all of this was from having strep. Are you telling me some doctor somewhere ACTUALLY told you this was from strep? Because if they did...you need to keep waving that fact in every docs face you see. Do not let anybody dissuade you from that fact. That's your key!

Could the fact that I was on penicillin affect my RF test? I'm on Minocin and Zithromax (for the strep) now and my RF is bouncing up and down like a rubber ball. I'd gotten down to 260 but when we added in Zith I went up to 366 RF again. My AP doc says not to worry, as we kill off more microbes I'll eventually go RF negative again.

Aren't I too young to have RA? Unfortunately no. But, if I'm right and you are Palindromic then you will not necessarily get damage and if you reverse this enough...you have a chance at a 'cure'. Understand, nobody says 'cure' and 'RA' in the same sentence...but if you ARE Palindromic...we have the only AI disease with an up to 50% natural medicine free remission rate. Please, please, please grab the bull by it's horns. Your future may depend on it.

www.palindromic.org

www.roadback.org

I'm here if you have questions,

Hugs,

Pip

Welcome to the board.

I have had flares come over night and even over an hour, so yeah. They can come up that fast. I don't think their is a way to prevent them though. Maybe someone knows how and will tell us both?

Mine started the same way. I would flare in a joint for a couple of days, then when that joint felt better, it would migrate to another joint for a few days. It was hard to concentrate on anything else because the pain was so excrutiating.

When my PCP scheduled my first appointment with my Rheumotologist, I literally cried because it was going to take two months to get in. I absolutely didn't know how I was going to make it. Of couree, I did make it.

Maybe you could ask for a burst-and-taper prednisone so you can actually enjoy your vacation. Prednisone is like magic in a little white pill for me though I try not to take it much as my RD says it isn't good for me on a long term basis. If it does work for you, it's likely your poblem is inflammatory in nature.

Welcome to the board but sorry you need to be here.

I'm Palindromic and Kweenb, you are too? Uggh. No tea yet this morning.

Who was talking about stress? Stress is MOST definately a trigger. Susanita on AF posts a ton on the HPA axis and the hippocampus and there is a HUGE reply on AF from me to Susanita (did it last night) on 'sticky blood' stress and blood proteins. Oh, God, it's too early to have this convo without tea.

Pred made me worse but worked for KweenB.

Something you can do now, besides water and eating really healthy, is add in probiotics. Go to the nearest Health Food store and get as many live cultures and different strains as possible in one pill. You'll get intestinal discomfort, but, it will ease up pretty quickly. See if you can handle 2 a day (most people can't) but...it should really start helping within a week (at the 2 dose).

Hugs,

Pip

I'm kinda in the same boat as you, waiting to see a doc, then we'll be waiting for test results, then we'll be waiting for a diagnosis. It's very hard, I know. I'm waiting for an appointment in March...

You've come to the right place for advice. I can't offer much, but I can wish you well, and Welcome!!I've always believed I was Palindromic. Doc says RA, but I don't know why he considers it RA instead. I'm going to try and remember to ask him next visit. I always forget to ask!

Oh my gosh, stress is my worst trigger. The bigger the stress, the bigger the flair.

Pip, sorry the prednisone didn't work for you. It's always a life-saver for me.

This is such a weird deal. My knee is feeling almost completely better now. I don't get this at all.
On the bright side... I'd like to report that my amazing boyfriend has been sitting in Iraq, trying to find a computer to research all of this. He has continuously told me that we'll get through this together and that we'll be just fine. I'm so blessed to have such a supportive best friend/boyfriend.
I'm trying my best to just look forward to seeing him! I want to try to avoid any drugs as of right now. I have always had a hard time dealing with almost ALL medicine. (Not a good thing for all of this I know) So at least for this week that I get to go see him, I'm hoping the Ibuprofin can keep me fairly pain free and I can enjoy myself!

Yeah, I didn't have the love-hate relationship with Pred. It just didn't do anything and my hubby was the one saying it was making me worse. It was the downward spiral at the beginning for me. But, for most people, it works like a charm.

Habr - probiotics are natural good gut bacteria. I'm betting with the recent strep and the antibiotics, the doctor failed to mention to take probiotics to replace the good gut bacteria that we need and which was just killed on antibiotics. That's probably why after the penn wore off you started more 'PRA flares'. You can get natural probiotics in yogurt and kefir but most of it's not live culture and processed with sugar added. You need to 'restock' your gut ASAP. Hence my suggestion of getting the pill form.

Hugs,

Pip

P.S. Make sure you're not OD'ing in Ibruprofin. If you need, get some pain meds. Asprin and antiinflammatories are harsh on the stomach, and in some research, have been linked to a worsening of our diseases.

Welcome and I'm sorry this is such a frustrating time for you. You will find answers, but it may take a bit of time.

The one thing I didn't see was a list of any meds you are on now to control the pain and any inflammation you are experiencing. You should see your primary to get that under control so you can enjoy the return of you BF to its fullest. I had to wait 3 months for my first rheumy appointment and the anti-inflammatories I took during that time helped.

I hope you find relief soon.
- Joy
Ooops, missed page 2 where you said you didn't want to take any meds but ibuprophen! Welcome -

Lots of good advice already - try to just enjoy the homecoming with your boyfriend and deal with the rest later. Sounds like he's a keeper if he's been researching already.

Mine started like Kweenb's - a joint here and there, with horrible pain and then be gone for awhile. The swelling and stiffness was there every day later, but the original joint pain was sudden and intense. I don't remember if I looked up Palindromic - maybe I should and question my new RA (old RA retired)

CathyAK - I'm a few hours south of Alexandria, but that was a favorite summer vacation destination for many years. I should have signed up with a nickname - kind of confusing things. Sorry about that. Maybe we will have to sign off with MN or AK....

CathyMN