How did your RA start?

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Red_34
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   Posted 9/10/2009 10:16 AM (GMT -7)   
I'm curious to know what your very first symptoms were.......
 
Thanks!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**IBS~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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momto3
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   Posted 9/10/2009 11:23 AM (GMT -7)   

Hi there,

I came down with a horrid stomach virus and a couple of weeks later, I developed severe knee pain in both knees.  I went a couple of weeks and finally went to my pcp, and he ran some tests, all were fine, gave me a strong NSAID and sent me on my way to a rheumy.  The rheumy thought I had parvo, because I was teacher working with small children.  That was over 4 years ago and here I am shakehead .


elcamino
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Date Joined Sep 2005
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   Posted 9/10/2009 12:09 PM (GMT -7)   
My symptoms started with severe joint pains in feet and hands (while I was pregnant).  Of course, the ob/gyn dismissed my sx as just another manifestation of a hysterical, hormonal, pregnant female.  Sx continued and worsened after delivery.  Finally went to PCP because I have a family history of AI disease (including MCTD and RA), she ran the arthritis panel and i came back positive.  Went to rheumy and the rest is history. I guess, in my case, it was relatively easy to dx because my rf came back positive.  It's not so clear cut in many cases. 

Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Lupus
Current Meds: Enbrel, Methotrexate, nexium, tramadol, nasonex, Nifedipine, Folic Acid, Tylenol PM


gonuts
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Date Joined Jan 2008
Total Posts : 159
   Posted 9/10/2009 4:04 PM (GMT -7)   
Well, i am one that didn't know what was happening to her. I was working at the time, I had just had my C-spine surgery... I noticed after a while that i was always tired. so 2 yrs later, Out came the thyroid.. ok, I thought, yeah, I will feel better now!! shakehead Wrong. After a yrs of feeling achy and headachy and feverish but no fever. (like having a slight case of the flu) I was let go from my job due to the inability to concentrate!!!
My mother suggested i go to her rheumy doc. ( she has fibro) ,...so i went and to make a long story short. they said i have fibro and RA. They also believe i have Lupus and Akylossing spondilitis. Yippie. So much for feeling better after the Thyroid surgery. sad

Thanks for asking and letting me blow off some steam!!! Laura wink
Cervical spine surgery 2004, C-section 1986, Cholecystectomy 1999, Thoracic and Lumbar injury 2000. Anxiety/depression 2008. Fibromyalgia 2009, Thyroidectomy 2008. Degenerative disc disease. IBS. Asthma, Rheumitoid Arthritis, Sacroillitis, Scolylosis, disc bulge in L5/S1.possible Lupus and/or ankylosing spondylitis. Meds: Lisinophil, xoponex, symbocort, pulmocort, troponal, vitamin 2000 D, Vitamin B complex, Hydrocodone, Tylonal Arthritis, Cymbalta.prednisone and Lyrica


Nana Monster
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Date Joined Jul 2009
Total Posts : 952
   Posted 9/10/2009 5:36 PM (GMT -7)   
Both mine and my Dad's started in our feet when we were 7. Mine was in my toes and eventually spread
to the ankles, knees and hips. Got my upper torso in my 20's. My grandaughter started in her upper torso
when she was 9, now she's popping and crunching at 12. I was about the same age. 
 
My nephew was 2. He collapsed on us when we were walking. He was diagnosed with JRA, was put on
18 baby aspirin and it was 6 months before he could walk again. He's now early 30's. Another nephew
was 16 and showed signs in his legs. My sons were nearly 20 before they were struck with it. I'm
suprised at how heriditary a disease it is.
 
              Nana Monster

SydneyJo
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Date Joined Mar 2006
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   Posted 9/10/2009 5:41 PM (GMT -7)   
Hey Red,
With my Crohns Disease I was used to having random joint swellings, but when I started to have hip, lower spine and leg pain, I knew it was something different. My Rheumy did scans, xrays and blood tests to confirm I have AS brought on by my CD - wonderful!
Jo

Red_34
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Date Joined Apr 2004
Total Posts : 23413
   Posted 9/11/2009 3:59 AM (GMT -7)   
Thanks for the insight everyone! :) I am going to make an appointment with my PCP soon (finally!) to get into the rheumie doc. I thought I may have OA but the joint pain is becoming more uniform on both sides. Now both my knees have been stiff and sore (right one swelled up on me a couple days ago). I have been tested before by the rheumie and had every test imaginable but they were always negative. I was more or less waiting to see if anything new developed and truthfully I think that if I do have RA that my 6mp (an immune suppressor) is keeping things sort of in check for me. But my knees are a new development. I mean I have had knee pain over the years but I chalked it up to flaring with my UC but now that they are starting to swell (especially the bursae).

Have any of you ever had weakness in the leg muscles? Like you felt you were walking thru mud or heavy sludge?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**IBS~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


momto3
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Date Joined Nov 2006
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   Posted 9/11/2009 6:20 AM (GMT -7)   

Someone mentioned feeling feverish without an actual fever, almost flu like? That is me for the last month, along with being feverish, I am so terribly tired, I normally take Trazadone for sleep, but lately I've been able to sleep without taking it, and when I wake up in the mornings, I feel exactly as I did when I went to bed. I was diagnosed with low B12, and I've even been taking B12 injections and will be going for #6 very soon, and it seems I'm getting worse! This is a new symptom of RA for me, the constant, never ending fluish, fatigued, sleepy feeling.

Sherry...My tests have always been negative. I hope you get into a rheumy very soon.


SydneyJo
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Date Joined Mar 2006
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   Posted 9/11/2009 6:41 PM (GMT -7)   
I suffer with the fluish/fatigue symptoms too momto3. I was putting this down to taking MTX, didnt really think about it being the Arthritis. I have been waiting 8 months now for approval on Humira, but havent bothered pushing for it as I am always fluey. Thanks for mentioning this :)
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 9/11/2009 8:25 PM (GMT -7)   

It's the symmetry of both knees swelling which gives the indication of RA type symptoms. But there seems to be so much variation on the diagnosis. I'm like momto3, started with a flu virus but the aching joints neverwent away, after 3 months of anti inflammatorys my knees were still swollen and sore, so off to the rheumy. It was a steady decline frm then on in, 3 years later I'm on humira, mtx and mobic and seem to have finally stabalised. As long as i don't overdo it!!! Good luck with the rheumy visit, golitho


momto3
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Date Joined Nov 2006
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   Posted 9/12/2009 11:27 AM (GMT -7)   
Jo...When I first started out on the MTX, I had the fluey feeling, but that was ages ago, and now it is back full force.  It is the most miserable feeling! I thought I was the only one with this craziness shakehead I wish I knew how to get rid of it!
 
Golitho...how long did it take before your rheumy actually said you had RA? I just kept going back to mine, not really understanding what was happening to me, until one day I went for an x ray of my hands to check for "rheumatoid", and that was probably a couple of years into my treatment.  That was when I lost hope of it ever going away, before that I thought if I kept taking the medications the joint pain would go away at some point, how naive I was!!

golitho
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Date Joined Sep 2008
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   Posted 9/13/2009 12:45 AM (GMT -7)   
Momto, probably only 3 months after I started seeing her. The sulphur solasine wasn't working and the swelling wasn't going down in my knees...she said if it was just viral then she'd have expected some improvement, basically told me she would treat me as if I had RA. It was a bit shocking to say the least, I reckon I was in denial for quite some time. Probably took going on the mtx, arava combination before I finally accepted it was here to stay. I guess it sort of creeps up on you and you realise there is no going back to how you were. But I feel a bit more positive abut it now, got very depressed for a while at the beginning of this year. What about you? golitho

momto3
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   Posted 9/14/2009 7:21 AM (GMT -7)   
Golitho..When I was on the MTX, Enbrel and Plaquenil I felt pretty darn good! But then I had to get off of the Plaq, and couldn't really afford the copays for the Enbrel, after that I seemed to be on this downward spiral of fatigue/fever that I cannot get rid of.  Yes, I have accepted that this isn't going to go away. However, I still get depressed by the chronic day to day fatigue of the RA, because it is there every single day with no end in sight.  I know the MTX alone isn't working but I'm not sure what to take since I've taken just about every medication with the exception of Humira (sp) and Remicade. 

TayIsa
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Date Joined Sep 2008
Total Posts : 285
   Posted 9/14/2009 8:00 AM (GMT -7)   
My symptoms started with  my pinky finger on the right hand aching. Then it went to the full hand, then my left hand started to ache.....was weird. Then it has progressed to knees,hips,wrists....well you know the drill pretty much all my joints now.

golitho
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   Posted 9/14/2009 5:04 PM (GMT -7)   
I guess what we're all saying Red is that you may have it but have clear blood tests! Its hard trying to find a rheumy that you can really talk to but because it is such a debilitating illness and you can get so depressed from it, try to find some one who really listens to you. There are so many different forms of arthritis but it seems to be mainly semantics, the treatment remains the same.
Momto it sounds as if you are flaring, you have to go back and add another med to the mtx, quaity of life really matters. I find the humira, mtx mix good, I'm still inpain if I overdo it or the weather is bad, but always seem to come back to a manageable level.
It's my endometriosis thats playing up on me right now! Always something! Golitho

momto3
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Date Joined Nov 2006
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   Posted 9/14/2009 6:55 PM (GMT -7)   
Golitho...I have an appointment with my rheumy next Tuesday, and hopefully we will figure out what to do.  I'm graduating in December with a degree in Sociology, but at this point my final semester is starting out exhausting and I have much work to wrap things up! Speaking of your endo, that must be so miserable and painful, your surgery is coming up fast..Please keep us posted on how you are doing as well.
 
Red...Golitho is correct..find a good rheumy, one who will treat your symptoms and not base it only on test results. 

Red_34
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Date Joined Apr 2004
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   Posted 9/15/2009 4:20 AM (GMT -7)   
*Sigh* I just wished I could see a different rheumy. I have Blue Care Network which is a HMO and unfortunately I only have 2 rheumy's in my network. I went to the first one about 2 years ago when the joint pain really started to act up and he was a major jerk! The other one is his partner and he reports everything to Dr. Jerk. But I may go see this partner because he seemed younger and much more "receptive". It could very well be that I don't have RA but OA - all I know is that I am tired of being in pain! Btw, the only blood test that came out positive was my ANA but because I already have one auto immune condition they said it was from that.

I know I had a post earlier this summer about this but I was waiting until the summer was over before I started to persue the matter. So here come's fall and time for me to start fighting for my health........again! It took preserverance of pestering the docs for nearly 3 YEARS to find the true cause of my neck pain - bulging discs and herniated discs - by that time I was tired of fighting. Now I'm rested up and ready to take them on again! LOL
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**IBS~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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momto3
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Date Joined Nov 2006
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   Posted 9/15/2009 6:59 AM (GMT -7)   
Keep fighting Sherry! When I was getting diagnosed with my gastroparesis, the doctor I went to was very condesending (it was in my mind, kind of thing) so I started to believe that it really was, but he at least ordered the testing from a GI doc and low and behold it was GP, needless to say I never went back there, but at least I had an answer.  We know our bodies better than anyone else. You are on the right track.

blkfoot
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Date Joined Sep 2009
Total Posts : 6
   Posted 9/20/2009 7:51 PM (GMT -7)   
I came down with RA about 7 years ago. I'm 32 years old and was shocked to hear the news that me; a young athletic vibrant young man has arthritis!!! Mad!! Mad as hell!! I started on Enbrel and was very happy with the results. Not too many side effects other than head aches, and that was about it. Last year I was in the hospital for almost 2 weeks only to find out that I now have Crohn's disease. I started taking Humira and it did the job for the Crohn's but my RA was worse than ever. So with the help of my specialist I started on Remicade. It is working well, but not as well as the Enbrel did for the RA. I have a couple months worth of the Humira in my fridge that expires in Dec and I don't know what to do with it. I know I went for almost a year with RA without being diagnosed because I had no Insurance. If anyone has advice what to do with the Humira please let me know. I'd hate to see such an expensive(but needed) medication go to waste. PS RA and Crohn's SUCK!! If there's anyone else that has both please let me know!

blkfoot
New Member


Date Joined Sep 2009
Total Posts : 6
   Posted 9/20/2009 7:59 PM (GMT -7)   
golitho said...
It's the symmetry of both knees swelling which gives the indication of RA type symptoms. But there seems to be so much variation on the diagnosis. I'm like momto3, started with a flu virus but the aching joints neverwent away, after 3 months of anti inflammatorys my knees were still swollen and sore, so off to the rheumy. It was a steady decline frm then on in, 3 years later I'm on humira, mtx and mobic and seem to have finally stabalised. As long as i don't overdo it!!! Good luck with the rheumy visit, golitho
I don't know if it's just the Crohn's but once in a while I feel cold, tired, sweaty, and just depressed. I'm on my feet all day, and every now and then I feel like I just need to take the day off. I work my ass off, and my wife and everyone I work with just doesn't understand that when I have a bad day it's REALLY bad. How do I explain to them that it's THAT bad??? Anyone that doesn't have these terrible diseases just can't comprehend how BAD a bad day really is... To boot, I have no more paid days off because I missed a month of work due to being in the hospital with Crohn's!! What the HELL am I going to do?? I'm getting depressed, and the fatigue is sometimes getting in the way!! NEED HELP!!

Red_34
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Date Joined Apr 2004
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   Posted 9/21/2009 8:26 AM (GMT -7)   
Blkfoot, I know what it's like to have both an IBD and arthritis. It is NOT easy! I get frustrated too when someone wants me to do things and I simply can't. Heck I get frustrated because I CAN'T do some things too! My hubby is very understanding and if I tell him I am having a bad day, he doesn't push me to do things. The same with my kids. My closest friends are great as well. It's the rest of the world that frustrates me! I think the turning point as the "ah-ha" moment for my circle of support was when I was really sick and got down to 107lbs. I looked like a walking skeleton. It was at that time I believe that people realized just how bad I was.

The best thing you can do is educate everyone around you. Get some literature or even have them come on here and read about what everyone on here has to endure. Unfortunately most times these are invisible illnesses and if they can't see it then it doesn't seem bad. They can never truly understand unless they get stricken with an invisible illness too - though I wouldn't wish that on anyone! If you are getting depressed over these matters what if you were to look up a therapist to help you overcome this? Perferably a therapist that deals with chronic illnesses.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**IBS~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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gonuts
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Date Joined Jan 2008
Total Posts : 159
   Posted 9/21/2009 11:07 AM (GMT -7)   
OH am i glad to hear i am not the only one who is having the flu feelings!!! I was the one asking about it originally...and i am glad i did. I actually had 3 wonderful, glorious days of no headache or nausea. It was wonderful. I was put on arava and upped my Lyrica for my fibro. I don't know if that is why I felt better or not.. But unfortunately, I am starting to feel crappy again.. the head, stomach and achy.
I may have overdid, I was doing laundry and painted my two doors, (3x each) one side. Boy they needed it!! But now i think maybe that is why i don't feel good again... it is so hard to say. I go like this.. I will have 2 or 3 days of feeling ok and then i go right back to feeling crappy again!!! it is so discouraging. I have so much i wish i can do. But the body keeps yelling at me not too. But then you get the hubby aggravated even though he understands most of the time. Living this way is so hard at times. You make plans, and then you have to put them off until the next good day come around. ( hopefully)

Well, I'm done raving. Thank you for all your feed back on the flu like symptoms!!!! Laura
Cervical spine surgery 2004, C-section 1986, Cholecystectomy 1999, Thoracic and Lumbar injury 2000. Anxiety/depression 2008. Fibromyalgia 2009, Thyroidectomy 2008. Degenerative disc disease. IBS. Asthma, Rheumitoid Arthritis, Sacroillitis, Scolylosis, disc bulge in L5/S1.possible Lupus and/or ankylosing spondylitis. Meds: Lisinophil, xoponex, symbocort, pulmocort, troponal, vitamin 2000 D, Vitamin B complex, Hydrocodone, Tylonal Arthritis, Cymbalta.prednisone and Lyrica


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 9/21/2009 3:59 PM (GMT -7)   
Blkfoot and Laura.. I share your frustration!! It seems to start out with something like RA and then the next thing you know you have another ailment.  I also now have gastroparesis, which is stomach paralysis, but no one knows why, maybe the meds.  It is terribly frustrating and depressing!!! Not too mention the low B12, despite my monthly injections, it just never ends rolleyes As Blkfoot mentioned it is difficult to understand the physical limitations unless you have one of these diseases, and all the medications that go along with them!
 
It is difficult to keep up with our busy schedules and I have been on the go so much, I forgot to take my MTX over the weekend, so I guess I will see how I get through the week without it.
 
Hang in there!!
 
 

SarahObear
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Date Joined Sep 2009
Total Posts : 14
   Posted 9/21/2009 4:31 PM (GMT -7)   
My RA started as foot pain. I thought it was just uncomfortable fashionable shoes. Then I had about a month between jobs so one day I tried to pick up a giant bag of corn and pulled my groin. Well the urgent care doctor sent me home with some drugs and told me to see a PT. I went to 5 sessions and they were HORRIBLE. It really felt like torture. Then I got a huge red hot lump on my finger and I knew well enough from my grandmother having RA. I went to the doctor and he sent me to the specialist right away and it was pretty clear what the problem was...

That was just last year. My doctor has had a hell of a time finding something that works. I started on methotrexate and celebrex only. Then he added enbrel which was ok but I'm pretty large so the weekly dose didn't seem to be enough. Now we've replaced the enbrel with remicade and 6 weeks into my first full 8 week between time the medication seemed to have run out. So when I see him Wednesday I think they're going to have to shorten the time between injections.

I have faith everything will work out though...he's a good doctor and he really cares.

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 9/22/2009 6:50 AM (GMT -7)   

 Sarah...It seems like you are trying all of the different medications.  Are you still using the MTX? For the Enbrel, I had to cut my dosage in half and take two shots per week and that seemed to help.  I have never tried Remicade, so I have no experience with that one.  It seems most of spend a great deal of our time trying to find the right combination of medications to keep the pain and symptoms at bay, even if it is only for a short while.  If you get to where you are in a horrid flare, prednisone in small doses works wonders!

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