excruiciating pain in arms

[MakinIT]

Hey

many of you may remember a week or so ago I wrote about a swelling in my arm, pain, spider bite...etc...well they were wrong. The pain has worsened into all joints in my upper body (arms, wrist, neck ect...) and it has inflammed the bladder oh goody goody. The pain is like fire. I am in tears as I cannot even a pill bottle. My doctor told me today all tests are pointing to Rheumotoid Arthritis. Im seeing a specialist next week.:confused: WHY!!!!!! I am so angry and so mad I could spit.....(replace one letter) AUTOIMMUNE, AUTOIMMUNE!!!! I have been crying in pain and frustration for 3 days, and haven't slept for 5....Bladder has been such a mess I'm cathing. SOOO...I'm not positive but all is there. I'm just sounding off here. I don't have my comp. now. I am borrowing my husbands for a minute but I don't know when I'll get back on. Please respond if you can with any advice but it may be a couple days before I see the answer.

Thanks Ihave to lay down

Tracey

[ICNDonna]

Hang in there --- at least until testing is completed. It could be something else that's wrong.

Warm hugs,
Donna

[Moonheart]

Oh Tracey! I'm so sorry! I've been worrying that this is what is happening to me as well. I have all the swelling and pain in my joints, hard to function most of the time and my grandmother developed it in her late 30's also. :(

I'm so sorry you are going through this. PM me and I'll give you my number if you want to call me k?

HUGS,
Moonheart

[tigger_gal]

oh no I am so sorry that you are in so much pain.. sending you big soft hugs.
I hope that you feel better soon.

[Kara29]

Tracey,

That burning pain is so terrible to have, especially considering how much you use your arms and hands. I hope they run the appropriate tests and get down to the bottom of what is happening to you. I wish I had some advise to help ease the pain. Please let us know how things go.

Thinking of You and Wishing you better days ahead.

Kara:angel:

[MakinIT]

Well...they found it...I have Rhuematoid Arthritis...I only spent half my day bawling (as opposed to my full day bawling when I found out I had IC) This RA is nasty.

I'm in a "pity party" mood right now...want to get over it and move on... but the pain is not relieved by any opiates, it is screaming pain.

[ihurttoo]

I am so sorry to hear how badly you have been suffering. I know it was devastating to hear that you have RA. However, the good news is that now that they know what you have, they can begin treating it. When I got the Lupus d/x, I was devasated too, but I just had to remind myself that even though it looked like I was sicker after the d/x than I was before, in reality, I was actually healthier after the new d/x. Yes, that's right, healthier! And you are too, since you have had this for a while and had no treatment at all for it. Now, you will be getting meds and other things that can help it and I am willing to bet you will end up feeling better than you have in years!

I dont know if they started you on Prednisone yet, or any of the meds like it, but it usually takes a few days to get the dose just right. But, when it is right, you will know it. No doubt about it, b/c you will feel dramatically better. Every time I go on it, I feel so good! It gives me so much energy, I can leap tall buildings in a single bound! And best of all, my IC, fibro, and all my other conditions seem to take a break the whole time I am on it. I hope and pray that this happens with you too.

I know it is tough to hear the news of a new diagnosis. I really do. So, take some time to absorb it and it is okay to cry too. Sometimes it is quite cleansing. But, I promise you, that once they get you on the right dose of the right med, you are going to feel better. I just know it! And also, at least you dont have to listen to any more idiot Drs. who think nothing is wrong! From now on, they are going to be taking you seriously. So that is great news, especially since you have been suffering with this for a long time and being treated like dirt and been on no meds to help with this.

Please pm me if you need to talk to someone. Though I am not a Dr. and cant cure you, I can do something most of them cant...listen to you. :) You dont have to go thru this by yourself. We will all be here for you every step of the way.

Sending hugs your way,
Amy

[Bianchi]

I know exactly what you're talking about with RA and IC. I also have Rheumatoid Arthritis. Yes the pain can be excruciating, but there are meds available to at least make you more comfortable. There really is no cure. But between prednisone (too bad it has all these side effects, because it works), methotrexate, and now also Remicade or Humira, there is something that should help you. It sometimes takes awhile to find the right combination. I think your Rheumatologist will be able to that for you.
It's weird, it seems like there are quite a few people with IC, that also have RA. I guess it isnt known yet, if there is any connection.
Take care,
Bianchi

[Moonheart]

I'm pretty sure I have it also, and my grandma was diagnosed with it in her 30's. I'm sure my dad has an autoimmune disease. There are so many links between the diseases.

[MakinIT]

yeah...funny how I've been noticing the commercials for RA meds...seems like the side effects really suck but my body hurts so bad right now I'd take a steam roller running me over, over RA!!! I dunno about prednisone. I absolutely go bonkers on prednisone. My GP tried to give me some out of his "candy shelf" (that's what I call his sample cabinenent) yesterday and I refused because it makes me crazy. Plus, I have diabetes. at one time, this little 5'3 body had 225 very strong pounds on it. I could stairstep and run with skinniest and most tone chicks in pond at the YMCA, but I couldn't lose any wieght. I got diabetes and found a very strict diet and lost 75 pounds.My diabetes is well in control with wieght down, no worries but if I gain, it's uh oh..one more thing to stress on. (got IC and regained 25 though because the allowable foods don't overlap) BUT...since RA, in the last 3 weeks I've shed 15 pounds. I can't eat. Is there anything you guys find that helps?

[Moonheart]

Hi Tracey,

Gosh we have so much in common! I have the same exact thing going on as you do. I have been suspecting diabetes and just dropped about two pants sizes. I'm 5'3" as well and have been 200 pounds for most of a year. I don't know what I weigh now that I've dropped some sizes, but as long as the swelling is going down.

Without my MS Contin I literally cannot move. I'm stiff as a board and can't get out of bed, walk, nothing. Over the course of the day as I warm up I can do a little more, but not much.

I don't have any great ideas because I'm just figuring out what is wrong with me. I wish I knew more. :(

Hugs,
Moonheart

[MakinIT]

Moonheart:
AM is very hard for me but pain remains all day...I definately take 5 minutes and slowly stretch, even in the night when I have to pee, before I get up. I worry I will trip and hurt myself more. Egads, I'm only 41. I'm wondering if the community center built by my house has special arthrits classes in their pool? I'm taking my daughter over there after school to sign us up, I'll have to find out.

Tracey

[Moonheart]

Yep, I fell a couple months ago going down my stairs off my deck. Very high. My whole left leg went numb. I have severe weakness down my left side all the time, but that was just unreal. It was like my leg all of a sudden wasn't there.
It's strange because usually the more affected area will have the greatest swelling, and I'm swollen more on the right side of my body than the left. *shrug* Who knows.

Swimming sounds good. A hot tub sounds even better. Soothing. Good luck with that.

Take care and talk to you later,
Moonheart

[KathrynPInk]

Dear Tracey,
Is it possible it is fibromyalgia...or are the signs definitely pointing to RA? Yep, RA is in my family as well, and crohn's disease and then IC. (my brothers) I am so, so sorry you are in that much pain. I bet it is very difficult to get in a comfortable position. You have my hopes and prayers that it can be relieved and soon~~
Katheryn

[MakinIT]

Yeah..I'm sure the specialist will check for for fibromyalgia. I was actually hoping that was what it was. But the blood test came back high for the R.A. Factor. That alone can be a false positive but I have every other single symptom. It doesn't look good. I went to PT today and did the arm exercise thingy...where you "pedal" with your arms...I could only go about 60 secs forward, 40 back. A month ago, nothing was a problem. My hand strength has decreased by about 25% in the past 3weeks. And just tonight, my elbows were both so inflammed, you could feel the heat of the joints through my sweatshirt. I can't sleep at all. Even with Oxycotin and my morphine ER. I'm running a fever now...Grr. Anyway..I see the specialist next week...meanwhile...I'll live...My hands are getting clumsier but no distortion thank goodness.

Thanks....

[curlycue]

How did they know you have RA. is it a special blood test. My arms and neck have been hurting as well, My dr sent me to PT I went 24 times and its still there. I started Accupucture today felt great while I was there and then felt pain again in a couple of hours. I am going to pray for all of us. I am so glad I have you ladies. You guys are awsome. :pray: :pray: :pray: :pray:

[MakinIT]

I started with this unexplain inflammation above my right elbow..doc didn't know what was what..gave me antibiotics, but I was exhausted, weak, had fevers, as well as my usual strong IC stuff. The pain spread across the shoulders and into elbows and redness continued. They suspect the pain meds I'm on held pain in my hands down but I am now struggling with that and clumsiness with hands. SO...my doc did a CBC...found low white blood cell, gave me celebrex...told me I had a virus. The pain increased..increased to the point I was screaming in pain. I couldn't stop it. So last week my doc ran the Arthritis panel. They called me early the next day. There is a test that isn't exact but with the symptoms I have it is sure...it is a marker for RA...the normal number is 1-12 (1-12 whats, I don't know...) but then I wind up with 160 whatevers in this RA test....All I know is this test said that I was in the severe range...apparently what I know now is if I were in my 60's I would be in a wheel chair now because this is coming on me like a steam train. I month ago I could lift, move, pour, ect..I can't do diddly upper body...typing is even getting hard.My neck has to be totally supported. My legs are fine at the moment if those go....I don't want to think about it...independence completely gone, I am very scared of that. I don't want to be taken care of.Thanks....falling asleep.

[curlycue]

Good Luck

[Zygala87]

My Sister has all the same symptoms. She just was DX with Lyme Disease and was told she has had it for a long time. I'm sure your Doctor ruled out everything he/she could. Haveing RA today is not the same as our Grandmothers. There is help with the pain and Doctors don't just think" yep you got it, nothing can be done." I Pray you find some comfort. Having IC is sure enough of a cross to bare. I care, Hug. Ziggy

[curlycue]

:pray: :pray: :pray:

[Moonheart]

Tracey,

When you say your neck has to be totally supported, did you mean because of the pain, or because you can't hold your neck up?

I panicked when I read that because my grandma had RA and then a few years later acquired Lou Gherig's disease, or ALS. It was horrible. I won't go into the details, you could Google it, but I hope your doctor's rule it out. :(

[MakinIT]

Moonheart: I know what ALS is...I had Guillian Barre Syndrome when I was 20 and I was became very, very interested in diseases of the nervous system following that! After you spend a year paralyzed and completely dependent on others and machines to help you eat, breathe, pee and poop.... you become phobic of anything that may remove your independence. No, my neck hurts but my muscles are also weak...the same sorta weakness I have in my tricep and the epicondyl of the elbow (pain) and weakness in my forearms...hands. I don't think there's a connection between RA and ALS except Auto immune.

With Lyme disease,zygala...doesn't the rash look target like?

Thanks all

Tracey

[MakinIT]

But I think I will look up ALS

[Babs RN]

Tracey--
I'm glad they figured out what it is, sorry is was something so yucky.(Yup, that is actually a medical term). Every one of my last dx have been something autoimmune. You have been through so much and are such a strong person. Hang in there.

Hugs,
Barb:hi:

[MakinIT]

Yeah...Yucky...my favorite medical term. I've just decided there should be a disconnect from my pain nerves and everything. I am glad I have a counselor. My appointment with him a couple days ago was the most productive I've had in 4 years. I think because I've finally come to terms with the fact I can't work, and now we can move beyond the wall...I am just angry now and hurting, looking for the support from my family that I am having difficulty getting. But....I may be able to drag them into counseling with me...my counselor really wants me to, because they just don't get it. Anyway...Babs..you sure have alot of things going on...I've had a DVT...when I had GBS (a nurse dropped me when it was in my chart to be two man transferred) and my knees went completely under me...I mean the lower part of my leg folded under my knees and stretched the athrophied quads...between that and my paralysis...DVT time..

[MakinIT]

I am in so much pain right now I can't think straight...I woke from a nap earlier and the pain has spread to my knees and ankles as well as the the intense pain in my arms, which...beleive it or not....is even worse than before..I truly hate being a whiner but I "cannot take much more of this captain" (uh, Star Trek reference...Scottie..) sorry, lame attempt at humor. Holy schmoly this pain has to go away and go away soon. I am supposed to make an Easter Dinner tomorrow and I don't know if I could do it if they were in Hungry Man trays. And I'm scared. The pain moving to my lower joints is what scares me...I don't want to be dependent,

Have a great evening and happy Easter:bunny:

[pingpong]

A friend of mine has had RA for close to 20 years. She's taken prednisone, methotrexate, gold, and many other meds that I can't remember. She's had fantastic relief from Remicaid, though, and she was miserable when she had to change insurance and had to go without it for about a year. She's back on it and is feeling so much better. Hopefully your doctor can find something to give you relief.

[curlycue]

PingPong, That is great. I am so glad that your friend is going good.

Tigger I know its going to take time but I know you will find the right combo of meds and be on your way to a good life. I will pray for all of us, that is what I seem to do all day long. Have a good Easter.

[MakinIT]

Hi Curly cue: it's funny..you get to writing to so many folks you lose track...It Makinit with the goofed up joints...But Tigger has been writing alot on this thread so maybe that's why...

I've read about all the supplements that you listed Ping Pong..my chiro gave me list and I researched them and am going to decide which ones...I am going to take Glucosomine, and am taking Vitamin D, 300 mg of CoQ10, Probiotic (like what's in yogurt), and Vitamin C. I am researching others but I can't stay awake. But I will have to take out a small loan to get them. I sure hope my insurance will pay for stuff the rheum. prescribes. I woke up all night in pain. Took lots pain meds finally...between that and my bladder I am a wreck.

Anyway...research, research, researcj

Tracey (MakinIt)

[Kara29]

Tracey,

I hope those treatments give you some much needed relief! Has your doctor mentioned anything about complex regional pain syndrome?

Gentle Hugs:grouphug:

Kara

[curlycue]

What are Probotics, or should I say I dont understand how they work.My accupuncture lady adviced me to take some.

[MakinIT]

From what I understand, they help with intestinal problems...as my chiro was showing me research (such a dear man, he's dying of bladder cancer and is worried about my problems?!! I have to tell him because He can't adjust my neck anymore) But research has shown for some with RA "leaky gut" problems which means....I'm not exactly sure. How's that for help? I think it's that your intestines have problems and don't process stuff correctly so some stuff goes where it shouldn't? Anyway, your gut has a nice flora of yeast (good yeast) to kill the bad stuff. Probiotic therapy is supposed to beef up that flora of good yeast. We all have good bacteria and yeast in our bodies that is specific to us...and treats other bacteria as invaders...the leaky gut I think is supposed to cause inflammation of joints as your body reacts to the bad stuff. Sorry my explanation is so choppy and difficult to understand. I've lost my teaching mojo.

[MakinIT]

Uh, I don't know anything about complex regional pain syndrome. Although I don't think it's regional anymore. I awoke from a nap yesterday feeling very hot and uncomfortable and realized it was because my legs hurt so bad. So it has moved south. Iknow many of you have had worse stuff, especially under this catagory...but it is the only one that fits me with everything going wrong. I honestly feel like I am insane. My poor mom blames herself on my health because she smoked the entire time she was pregnant and she and my dad smoked around me (with asthma) constantly. but I always tell her she didn't know better. What's done is done. She's a great lady but I fear her living in guilt for the rest of her life. I've tried to talk her into seeing a counselor but there is nooo way.

Thanks for listening to my situation...I appreciate it. I am going bananas.

Tracey

[Kara29]

Tracey,

Pain is Pain no matter where you are feeling it. I'm glad you have a place to talk about it.

Your symptoms sound similar to some other disorders. That is why I asked if your doctor had ruled those out. I was just wondering if they ruled out Reflex Sympathetic Disorder and or Complex Regional Pain Syndrome. Treatment for complex regional pain syndrome is most effective when started early in the course of the syndrome.Complex Regional Pain Syndrome (CRPS) is the term used to describe pain and swelling in one part of the body. CRPS usually affects the hands, feet, elbows or knees, but can affect any part of the body.The pain may start after an injury, where the nerves have been damaged, or there may be no known cause for it to start. The pain usually gets gradually worse and may spread to other parts of the body.

There are lots of websites on this: http://www.mayoclinic.com/health/complex-regional-pain-syndrome/DS00265/DSECTION=2

Kara

[MakinIT]

Hi Kara

I tried to write you back last night and I was so pooped I couldn't see straight. I'm still dozing off so I hope you don't get any wierd words...it means I dozed for a second. It reminds of me when i first got IC and was getting adjusted to pain meds and could not stay awake for the life of me. I did go to bed last night with no extra pain meds...made it tough to stay asleep but I did ok. (I have to drive on Thursday so I have to haveall the valium and excess pain meds out of my body..)

The pain syndrome you speak of sounds like no fun whatso ever...it sounds pretty CRPpy. (get it...ha, ha) oh well...ba doom ching. I followed your webpage and I couldn't decide what was worse. My hopeful situation is a mild case of RA but that doesn't look so good because it hit me hard a month ago, hasn't ceased but gotten worse, is symetric, AND I have the RA factor of 160. See..some people have the RA factor and are still neg because it is fairly low and the pain goes away and was mild (vice versa also happens) I haven't read in the lit ANYwhere anyone over a 120. And they were in a wheelchair. My knees are feeling it, my ankles...I'm doing the mild exercises my PT gave me to do. SO...it is being done. I see her once a week and have done home exercises and am doing swimming at the pool near my home. (ok not swimming...resistance running in the water...looks stupid but at least I can get my heart rate up)

I don'tknow if any of you have this... Please tell me if any of you have this crushing need to sleep. ALL the time. i got up with my husband at six today, and took a shower, cleaned up, put on make up (no reason, just to feel awake) and now I want to crawl back into bed.

I really appreciate all of your advice and listening to me whine. I just feel like evertime I start to accept a new curve ball thrown at me ( hysterctomy, orthopedic surgeries, year long paralysis, rough preganancy, diabetes, Interstitial cystitis...that was a tough one because I lost my career...NOW this...And my husband has ridden almost every step of the way,I just want it to be normal.)

You guys are great. i think I would have gone crazy a long time ago with out this board. Oh, and my bladder is rising and falling in terms of pain with my RA. Wierd, eh?

[Moonheart]

I am tired like that all the time Tracey. I have days where I can wake up just enough to get the kids off to school, and then have to crawl straight back into bed. I had one day where I didn't wake up till 3 or 4 in the afternoon! And that was AFTER sleeping most of the night. :(

It's miserable. It really is. Then to have flares along with it...miserable.

Hugs,
Me