stiffness-swelling

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wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 5/27/2010 10:34 AM (GMT -7)   
I'd like to take a poll of some sort.
 
Is your morning stiffness as severe as it was at onset? Mine is no where near that. I mean back then I didn't even walk right- my feet didn't bend where they were supposed to. My husband use to tell me I should carry a baton because I was a high stepper. I feel like I just hobble a little like any other 50 year old who just got out of bed after 8 hrs. I walk it off pretty quickly. My hands always have a stiff feeling but again not like when they were rendered useless at onset.
 
I have very minimal to NO swelling.
 
When my doctor asks me about these things I feel like an RA fraud.
 
Yet every day- all day I have background pain. Traveling pains- not enough or for long enough to go grab pain relievers but I have a high tolerance too.
 
Is anybody like me?

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 5/27/2010 12:43 PM (GMT -7)   
Hello,
I am new to the forum and not positive if I have RA yet.....still searching for answers. I am not new to chronic pain, however, that has been going on for 3 years in my lower back. I am very sorry to get off subject, but, like I said I am searching for answers. You said your morning pain does not compare to your onset pain. Can you tell me about your onset please? I have read a lot about RA and I am concerned about it. Like I said I am really new....this problem just came up about 2 weeks ago and I just took my last steroid today and I am scared to death that the pain I had is going to return. It was overwhelming pain in every joint in my body! I thought I had a terrible ear infection and it was my jaw joint that was swollen and hurting. My knees would not bend or straighten right or without bad pain, I could not turn door knobs or write because my fingers and wrists hurt so bad and were very swollen! My sister said that my leg was turning in when I walked, when she saw me from across the street. The morning it all started I woke up at about 2:00am and felt like I had a very high fever. I was shivering all over and pit sweats on and got under 2 blankets. I woke up in very bad pain but no fever! I also was exhausted....all I wanted to do is sleep but I hurt to bad to sleep! Anyway, sorry again for changing the subject....I am just wondering if this may be my answer! The steroids helped after about 3 days, but now I have reduced them and taken my last one today.....so what happens next?? The only test I have had done so far is a SED rate and that was 53.....in 2006 I had a SED rate of 11. Do you know what your SED rate runs when in a flare? Any info you can give me would be appreciated....I am getting quite anxious! Sorry to hear about your pain, but glad to hear that it seems you have had some luck with partially controlling it! Thank you and take care of you!

Beckey

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 5/27/2010 3:45 PM (GMT -7)   
Hey Beckey- welcome. Sorry you are in the dark about what may be causing your ill health. I remember being there and it was a terrifying time.
I went to bed one night healthy and strong. I have always been a very healthy person. Everyone around me could be sick but I would never catch a thing. However the next morning I woke up and I hurt all over. It felt like I had the flu bad- that kind of hurt...but no respiratory symptoms. This continued for a couple days, each day the pain getting worse. It was really bad in the morning and would let up a little in the afternoon. By the third day I went to the doctor. She could not find a thing wrong with me so she started testing my blood. CBC, sed rate, CRP, Lyme, RA, Lupus, Parvo, etc, etc. Nothing was amiss except my sed rate and crp were thru the roof which means inflammation. She gave me naproxen. Well a couple days later I woke up in such pain that moving even a centimeter made me cry! I am pretty tough and have a high tolerance for pain. I called her and she gave me darvocet and said she thought I should make an appt. with a Rheumatologist which I did but there was a waiting list! That was Saturday- Sunday I had to call her again- no relief! She called in percocet and called an RD and requested they see me on an emergency basis. They right away put me on prednisone and I got a little relief but not much. I continued to get worse. They kept testing my blood but only the inflammation markers were high. I was going to the doctor every other day and the same with blood work- I was that bad. They felt I may have RA. So then they put me on methotrexate and a higher dose of prednisone- 20 mgs I think. Nothing- I got worse and worse. I had to take a medical leave from my job. The pain got so intense- I couldn't sleep. I couldn't get in my bed because if I did all my joints froze up and my husband had to yank me out of bed by the scruff of my nightgown. I got weaker and weaker until I was unable to sit up or walk to the bathroom unassisted. I had to cut my rings off I got so swelled up. Mostly my hands, feet and legs all the way up to the knee. I could barely fit a big slipper on my foot. My hands were useless- and tissue felt heavy and I did not have the range of motion to be able to bring it up to my runny nose from crying. I was soooooooo scared! I hurt so bad I wanted to die. The RD would not give me adequate pain meds. She did not explain things- i was just totally in the dark. Finally my husband blew up at her and said you need to come to our house 4 AM and see what this girl is going thru! 11 PM at night thru 11 am in the morning was the worst pain cycle time. I was all alone while the rest of the house slept- in agonizing pain. She said you are free to get a second opinion! Well I already was on a waiting list believe you me! Anyway she called in the other doctor of the practice and they called my GP. the three of them talked and decided that I better go for a CT of my head, chest and abdomen- they suspected a maligancy since it came on so quickly and severe and I was not responding to medication. I had also lost 23 pounds in 2 weeks. She also gave me oxycontin and my GP prescribed a sleeping pill. Once I starting gettin a few hrs. of sleep I was not as weak as I had been. The pain was still out of this world. Thank God the CT came back clean! So I just went on. Blood tests, visits, an awful life of pain. I really wanted to die. I had about 4 hrs. of the day when the pain was bearable- thats it. Finally the waiting list I was on for the second opinion opened up. The appt. was for a time that was during the worst pain period. I almost said I couldn't make it but I sucked it up and went. The doctor says (and he is old) that if I wasn't the worst case of RA that ever presented- It was the worst he had seen in a long, long time. He was great. I had chronicled everything from day 1, how I felt, tests I had, meds I tried, etc..He was very interested and asked a lot of questions and answered a lot of mine. I knew I found my new doctor. He increased my MTX and my prednisone to 40 mgs. per day. Beckey- I kid you not- that 40 mgs of prednisone tripped my body back into healthy mode. Not that I was 100% but I went to bed (my recliner) a broken woman that had to be put there to waking up and standing up by myself and walking to the bathroom by myself! Every day from there on in I got a little better and after 3 weeks I went back to work. It was a long taper but I finally got off the prednisone.
So-that said I have a lot to be grateful for. My doctor reminds me all the time. He said he never would of thought that I would have gotten as good as I did. I had a lot of people praying for me and all I did was pray and I believe that was a big part of my recovery as well.
So I am a good news story. You can be awful awful awful and get back to feeling pretty darn good. yes I complain- the further that onset gets in the distance the less I remember it and now I am annoyed by my traveling pains and so forth. Shame on me.
I wish you all the best in finding out what you have and getting a treatment that works.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/27/2010 8:04 PM (GMT -7)   
Hi Weary, my morning stiffness sort of comes and goes. If I've had a lot on I can wake up hurting all over and hobble into the shower to try and warm up the joints and get them all moving again. Other days I feel just alittle stiff or only in a couple of joints. I was put on massive doses of prednisone too.

I had 3 grams of it, intravenously and it also did wonders for my massive flare, but that was only 4 weeks ago. I've been on a down hill slide with sero negative arthritis for 31/2 years, just steadily getting worse. But I just read that often after a massive flare you can go into remission, so I have my fingers crossed that maybe this flare has a silver lining! Sounds as if you started with a massive flare, are you on a biological agent?

I've just started on adabacept, its an infusion you have monthly, so I'm waiting to see if its going to work for me, I get weary with it all too. We are all so different yet all share so much. Nothing like that on fire feeling in your joints to cheer up your morning! I'm glad you're feeling much better now, I'm hoping I will soon too, golitho

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 5/27/2010 8:14 PM (GMT -7)   
Hey golitho- sorry you are just getting over a big flare. I always live with that in the back of my mind that it's coming. I feel like a ticking time bomb. I've been lucky tho- only 1 flare since the first one and it was no where near as intense.
I just dropped Humira. It was not doing all I hoped it would do for me- I didn't think the risks were worth the little benefits. Dr. says let it get out of my system for the next 2 months and then see how I feel. If I feel worse than I do we can try something else or I can decide to live this way.

When you were not in a flare- how was your stiffness in the morning?

Good luck with good result from the infusions!

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 5/28/2010 4:57 AM (GMT -7)   
Hi Weary, Thanks so much for responding. Wow, I am so sorry to hear that your onset was sooo bad! But, that information was so very helpful for me. I have had chronic back pain for 3 years but have learned to deal with that...but the pain I woke up with that morning 2 weeks ago was almost more then I could take, and like you said, it was literally over night. I was already on MS-contin for my back with morphine instant release as needed and it was not touching this pain! It saddens me that you had to wait so long for the relief...as bad as it was...I don't think I could have made it that long! The day after it started I got a very large dose of steroids via injection and then went on oral. Started getting a little relief the next day already...not much...but enough to believe I might get through this. So I also understand how great that relief is. I guess that was my biggest question.....could this come on...literally....overnight? I am not using your info as a way to self diagnose but it is very helpful!! Thanks again and once again I apologize for getting off the subject of you original post! Take care of you!

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 6/2/2010 1:47 PM (GMT -7)   
Glad to be of help ant! I come from a family that would like to pretend I am in perfect health so when someone lets me talk about my RA- it's like a release!

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 6/2/2010 2:51 PM (GMT -7)   
Hi weary, I am sorry the family feels that way....I have some members who are the same! My adult daughter, who lives in another state, is one of them! She is my only child and she get's so mad at me when she calls. If I am having a bad day and she asks how I am, I tell her, and her answer is "Mom, you always feel bad." I have gotten to where I do not answer her calls on days that I feel really bad and I mask how I feel if I do answer! I took care of her through a lot....I mean a lot!! Addictions, bi-polar and other stuff, but she is doing very well now and just does not want to hear about my stuff! Anyway, take care of you and have a great day!

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 6/2/2010 5:57 PM (GMT -7)   
Hi weary and ant, I think its pretty common to not tell those close to us if we're in pain or not. People just want everyone to be good all the time they can't stand the thought of pain.... I try to cover up pain most of the time with those close to me and just down load it all here when I'm overwhelmed.
 
Its not that they don't care about us its just they can't fx us so they get annoyed with us instead. At least I think thats whats going on?
 
Weary to answer your earlier question my stiffness is fairly non existant once I'm on the biologicals. Humira, remicade and now orencia seem to wipe out stiffness with a magic wand. I wake and hobble into the bathroom, jump in the shower and the heat just sends the stiffness on its way! I can get a bit stiff from overuse of a limb but compared to being off the biologicals when I could be struggling for an hour or two to get myself moving. Hope this helps.
I'm sorry the humira wasn't working for you, I found that med a wonder drug for me, until it stopped working after my surgery to remove my ovaries. Actually finally got permission to start taking HRT, I just started last Friday so keen to see whether it helps the joints or not. I have been basically flaring ever since that surgery last Sept until my massive flare late April. Now I feel fairly good, joints undercontrol, just really tired. Tiredness is ruling my days. I'm hoping my rheumy will let me drop off the prednisone and then I can get back to sleeping. Seemingly the HRT will help my insomnia too. The wonders of oestrogen!
 
So hanging out for late June when I next see the rheumy. Starting a course for people living with RA run by my local Pain Management team. It was suppose to sart last tuesday but they rang and put it off a week. I'm hoping just talking to other sufferers will help even if the course is stupid. Oh I am so positive!
 
Hope you two are good, I'm going to rest before going in to work for the afternoon, golitho

harrington49
Regular Member


Date Joined May 2010
Total Posts : 355
   Posted 6/6/2010 7:28 AM (GMT -7)   
Hi Everyone

My pain and stiffness in my hands is the worst in the morning, some mornings better than others. I find that I am pretty stiff all over when I first get up, like the rest of you I guess, but I have also found that if I go for a walk for about 30 mins or a bit longer, I feel really great when I get back, I suppose because the muscles have warmed up.

Just thought I would share that with you.
Harrington49


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/6/2010 6:22 PM (GMT -7)   
Not at all, however, I know if I skipped my plaq for a week or so it would be just as bad as before I started treatments.
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