Newbie...not yet diagnosed....

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antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 5/27/2010 7:44 AM (GMT -7)   
Where to start......well...in 2007 I slipped on ice at work, I did not fall but I twisted hard and weird and hurt my lower back. Long story short...I was dealing with workman's comp docs who could really care less and the only real diagnosis I got was a non-specific problem at L5-S1. I basically got released with no follow up after 2 months off work and was told it would get better on it's own. It never did and I was afraid of losing my job, and thinking that maybe it hurt because I had been off work for a while, so I kept it to myself and suffered through with vicodin. Well, the job fired me anyway and now 3 years later I am suffering worse! I have lower back pain all the time, when it is at the best it gets, it is still about a 3. I have pain that comes and goes in my hips, rear, thighs, knees, feet, neck, shoulders and head! I have nerve stuff going on all the time....it feels like I have spiders crawling all over my legs and muscle twitches. I am now on MS-contin and cymbalta. Prior to getting hurt, I worked double shifts as a waitress at a busy restaurant and worked as a finisher for a home builder where I was on my feet on concrete for ten hours a day! Now I can not stand for 1 hour....or sit or lay down without pain! So, this has been my life for 3+ years and then 2 weeks ago.....bam....got hit with something new!! It was a Thursday morning at around 2:30 am...I woke up hurting which is nothing really new but this was different! I also felt like I was running a very high fever. I put sweats on and crawled back under the blankets and I was shivering all over. This is very different for me because I usually get very hot when I sleep and I was freezing! I was able to go back to sleep but figured I was going to wake up very sick. I woke up again at 5:00 am and did not feel sick really, other then every single joint in my body hurt so bad I wanted to cry! I have only had actual "joint" pain on rare occasions. And I had a terrible earache! I figured it was the ear infection that caused the fever at 2:00 am, but I had no fever at that time. I tried putting peroxide in my ear but I got no results....it would not go into my ear. My wrists, hands and fingers hurt really bad and were swollen. My knees were killing me, my feet hurt and my neck and shoulders were so stiff. I also had a headache. The MS-contin was not touching any of this pain!! I finally decided to go to doc on Friday because the earache was unbearable and the joint pain and swelling was not improving either. I also had a weird lump on the top of my arm above my left wrist. When I got there the doc looked in my ear and said, to my surprise, "there is no infection, your ear isn't even slightly red." She discussed the possibility of TMJ and was a little worried about polymyalgia rhuematica. Because I do not have insurance right now, she decided the most cost efficient thing to do was a SED rate. I had not had one since 2006, when my rate was 11. Her concern at the time was the polymyalgia and she said if it was that my SED rate would be sky high. She gave me a steroid shot and some oral steroids and said let see what the SED rate shows. She called to tell me the SED rate was moderate, that it was 53, but she felt better about it not being polymyalgia. So I was told to take the steroids and we would go from there. Well it took about 3 days but I finally felt better.....well better from that and was just back to my "normal" other pain. Now I have tapered off and will take my last steroid today and I am scared to death!!! I am starting to get a little achy, the lump above my wrist is coming back and I just have a general sense of doom! Also, I forgot to say I have been totally exhausted. I don't sleep for long periods at a time because I hurt, but I feel like I could sleep all the time! I am looking for some answers because it seems like my doc was so concerned about the polymyalgia she was not looking for other things. My sister has belonged to this forum for a while....well the fibro and the migraine. I have spent a lot of time here reading, mostly in the chronic pain until this last episode then I came to the RA forum. Can some of you share what your flares are like, or your first flare that brought on your diagnosis. Also what is a "normal" SED rate for RA? I am just looking for some help.....thanks for reading! It is nice to have people who understand to vent to! Bless you all on your personal pain journeys!

Marburg
Regular Member


Date Joined Mar 2006
Total Posts : 486
   Posted 5/27/2010 8:37 AM (GMT -7)   
Wow! I'm sorry to hear you are going through that. I'm normally at the Diabetes, GERD or Irritable Bowl forum so I am new to this board. Last January I started having severe pain that started on my right side near the appendix but lower that eventually traveled down to the groin and up around my waist to my back. I have had periodic back aches in years past but they were usually associated with a UTI. This pain was different but similar to ones I've had when I had a cyst (ovarian). Since the ovarian cyst was no longer possible (had a hyster due to a cancer scare 2 years ago which turned out fine) I went to my doctor. She examined me and then sent me to radiology right away because it fit the profile of a pinched nerve between L4 and L5. Turns out it is RA due to an old (almost 40 year old) injury. The doctor explained that the more active we are as children the more likely we are to develop some form of RA due to undiagnosed injuries (I was active in sports: football, basketball, baseball, soccer, rock climbing, hiking, hockey, biking, etc. and had several injuries that came to mind that didn't report to my parents). So now, in addition to dealing with the other medical conditions, I now have semi-chronic back pain (not every day but several times a week). I am not on any meds for it.

I was told to do back exercises-but they don't seem to be helping. I also have RA in my knee due to an injury. Not really sure where to do from here.

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 5/27/2010 9:35 AM (GMT -7)   
Thanks for responding. Sorry to hear of your pain. It is hard when you were once very active and now you feel like you can't do anything! Hang in there and wishing you the best!

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 6/2/2010 6:22 PM (GMT -7)   
Hi Ant, It sounds very like an RA flare or some sort of flare, the blood work should give your doctor some sort of indication as to whats going on but not always. The swelling and pain if its symmetrical and lasts longer than 3 months seems to be the way the rheumy's diagnose RA or sero negative arthritis. Also if you don't respond to an antiinflammatory med. So its early days for you, don't panic it could easily be a reactive form of arthrits that will go away after a viral infection or whatever. It sounds like you need to get a referral to a rheumy to check you over, xray those joints and diagnose whats going on.

There are so many different forms of this disease, get a referral and talk to an expert, thats my advice, golitho

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 6/3/2010 12:08 PM (GMT -7)   
Hi golitho, and thanks for responding.....yes this is all pretty new. I, or the pain, responded very well to the steroids! When I thought nothing was going to help, that I was just going to die, the pain started to fade and was basically gone in 4 days. I have been off of the steroids now for just over a week and I am starting to get some pain back in my wrists and thumbs on both sides! My wrists also seem hot. But it is on the inside, like a band of heat going around the wrist bone inside. You can't feel the heat from the outside. Does that make sense? Also feel like I am having quite a bit more pain in by lower back. That is kind of hard to judge though because I have had better days and worse days with my back for 3 years....just seems like a lot more bad days lately. As far as the original pain, it was all symmetrical, except my jaw...that was only on the left side...and it was bad! But as for now, just waiting to see what happens next.

But any and all advice is welcome right now......thanks!!

Take care of you!

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 6/3/2010 6:57 PM (GMT -7)   
You just have to keep trying to find answers, go and see more doctors and get more opinions, if the steroids helped then there is definately some sort of inflammation going on, can they put you on a low dose of them until you get to see a specialist? You wouldn't think it could hurt?

But I know very little, best wishes, golitho

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 6/3/2010 8:35 PM (GMT -7)   
Thanks Golitho, I am just scared and have been having some very bad days lately! I do not have insurance and don't know what to do anymore! Just lost my job and we are broke, so I am trying to find a starting place to maybe suggest something to my doc because they make me pay $50.00 every time I go in....money that I do not have....I hurt so much, even just my back that I am getting desperate! I feel like I am turning into this mean and hateful person. I make just a little too much for medicaid and I now owe $340.00 in order to re-instate my insurance through COBRA. which I don't have! The monthly premium is only $85.00, which I could pay but it is just paying the back stuff now. I pay $80.00 a month for my pain meds that are not at a high enough dose to touch the pain anymore! I find myself getting angry that my sister is on medicaid and gets the care she needs while I sit here in pain! That is not her fault, but it stinks! I am sorry.. I did not mean to just lose it like that! I am just very down lately....very down! I feel like my life is over.....the pain just consumes me completely anymore....and that is just my back right now!! What happens if the other comes back?? Again, sorry....thanks for listening....just needed to vent....I feel soooo alone! Going to bed and hoping for a better day tomorrow! Thank you and take care of you!!

Beckey

harrington49
Regular Member


Date Joined May 2010
Total Posts : 355
   Posted 6/4/2010 11:23 PM (GMT -7)   
Hi Beckey

I'm sorry you are in so much pain, nobody deserves to be in pain. With the workers comp, isn't the company still liable for your medical bills? I am not sure how it works in the US but surely they still have some responsibility for you regardless of whether you work for them or not, would that be worth checking out? It's pretty unfair that they fired you anyway, I am sure you would have some rights but I don't know who you would contact to find out as I am not in the US.

With the monthly contributions that you make for your insurance, would they let you maybe pay the backlog off at a minimum payment per month, you don't know unless you ask. If they do, then you could get some physio on your back as it sounds like what you need.

I'm sorry I can't be of any better help, have you tried heatpacks and the cream as well on your back? I know there is nothing worse than being in pain, please don't get too depressed about it, don't let it consume you because it will if you let it. You need to get back to your doctor and tell him that the tablets aren't even touching the pain.


I hope you are feeling better tomorrow and you get some help for your pain.  Let us know as we all care.


Harrington49


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 6/5/2010 7:06 AM (GMT -7)   
Thanks Harrington and nice to meet you. My husband and I decided yesterday that we are just going to pay the COBRA from his paycheck this Wednesday. We are both done with this...he told me that he wanted his wife back! I am hoping to then get the treatment I need and be able to "come back"! I will get a refund from my pharmacy on my scripts after I get my insurance paid. I think that will be around $200.00. Anyway, I am hanging in there for now and really glad I have talked to so many wonderful people here! Thanks again and take care of you!

Beckey

ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 6/13/2010 12:52 PM (GMT -7)   
This sounds like it could potentially be a form of reactive arthritis or something similar....your immune system may have been exposed to something, which may not have even developed into an active acute infection.....and decided it's had enough.

Lymph congestion backing up into the sinuses and the ears is fairly common in ReA, which I am learning more and more over time is very much lymph-centric (though my case may be moreso than most, because i have actual damage and massive scar tissue in some of my critical lymph passes/nodes from my initial staph infections). This can feel very similar to an ear infection and/or sinusitis.

It may just be a bad RA flare, but you may want to look into ReA (aka Reiter Syndrome) to see if it may explain some of your symptoms and the way your flare came on.
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Crohn's Disease, Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, and a partridge in a pear tree.

Medications: Currently not that many are taken daily, but there are many at my disposal for part-time use. Low dose pain medication, after years at high doses. Working on innovative ways of taking lesser-known pharmaceuticals and non-prescription supplements to maximum benefit.


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 6/13/2010 3:29 PM (GMT -7)   
Thanks for the info Exitwound, I am definitely looking for some answers! I am starting to get kinda worried again...It has been 18 days since I took my last steroid, (which I was on for 2 weeks) and I am starting to get some of the symptoms back. I wake up in the morning and my hands are very stiff and hurt a little, some fingers more then others. My wrists hurt a little to when I rotate them. My elbows hurt a little when I pick up something and my knees when I squat and stand back up. My lower back has been really bad lately! I have had chronic pain in my lower back, with nerve impingement for 3 years and it never feels "good", but it has just been really bad....my pain meds are not touching it! I paid for my COBRA insurance so hopefully I can get some answers! Thanks again and take care!

Beckey
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