Just a foreword: I'm an 18 year old male - weird demographic for this disease, no?
Anyway. I'll start by saying that I've had some sort of pain my entire life; that is, I've never been without it. It started at around the age of 8 with my knees, but the doctors just assumed "growing pains" and it wasn't further investigated. Over the course of the past 10 years, it's spread to nearly every joint in my body; the only part that is exempt is my neck. My feet, ankles, knees, hips, back, fingers, wrists, elbows, shoulders, and jaw hurt. All have varying degrees of pain and frequency; the pain in my knees is the most prevalent. If I were to generalize, I'd say my entire body feels bruised, with varying degrees of pain in different areas and at different times.
I did contract Lyme disease over the summer--evident by the bulls-eye rash on my thigh, but it was treated with 20 days of antibiotics. I was prescribed 21 days, but one of the last pills got stuck in my esophagus and caused a large ulceration. At that point, I stopped taking the medication.
I never really complained about the pain. There were times, when it was exceptional, that I'd mention it in-passing, but I'd never request to go to the doctor or anything like that. I think it's because I experience a sort of indifference toward pain - dislocations, broken bones, and surgeries don't really bother me.
Now, about the RA. I recently moved in with my aunt who lives in NC to go to school, and while I was going up the stairs, I mentioned that my knee was really bothering me. I had a doctors appointment a few days later for insomnia and an infection/rash around my eye, so my aunt mentioned the knee thing to him. This was all that was mentioned - I didn't find any of the other pain relevant.
So, he refers me to a physical therapist. While I was there, I guess he noticed that my shoulder was bothering me and asked me what I did. I just told him I get a lot of random pains, and he recommended I get checked for autoimmune diseases. When I had another appointment with the doctor, because my sleep meds weren't working, I told him what the PT said. At this point, I still wasn't wholly sure what I could have, so I mentioned the four most annoying pains - my knee, jaw,wrist, and shoulder. This seemed to prompt him to administer a blood test, so we did that. He called me a few days later and said I showed signs of some liver damage and that I tested very high for the rheumatoid factor. He referred me to a specialist, but I won't be seeing him until the 21st. I'll be telling my doctor everything the next time I see him on Thursday.
The thing is: I don't think I have RA.
I lack a lot of important symptoms, and I also have a lot that don't relate to RA.
The ones I lack are:
-morning stiffness
-swelling/inflammation of the joints; exception is when my shoulder goes out (once or twice a year, usually); my hand seems to swell.
-symmetric pain - it does occur in both sides, but the pain is much, much more dominant on my right side
the non-RA symptoms I have are:
-muscle pain; I notice that on my shin, it only hurts on the muscled side. It never hurts on the inside where the bone is.
-burning sensation in chest and on back when I breathe; I don't smoke.
-severe headaches & nose bleeds
-what appears to be nerve damage; random spots (mostly in my wrists/knees) will go numb or get hot/cold. This is not the tingly numb from lack of blood flow or anything like Novocaine, but really numb.
-frequent infections in my eyes [recently - past 4 or 5 months] and dryness around them. I think this is because they don't tear much anymore.
-Short-lived pain around my kidneys - stabbing sensation.
Also, I'd like to say that the pain itself is not debilitating, but I find myself more and more incapable of walking up stairs. It feels like there's resistance or something in my knee that's stopping me from going up. And my joints seem to crack and pop a lot when I move them, specifically my ankle, wrists, jaw, and shoulders.
My parents think I have Lyme disease, but I have almost none of the symptoms, and I was treated for it.
My doctor thinks I have RA, but I still don't have a lot of those symptoms.
I'm not sure what I have, or how bad the pain really is (typically it's like the pain of a broken finger or similar to the aftermath of having my wisdom teeth pulled, in which they had to cut into my jaw. it can get a lot worse, but that's usually what it feels like). I don't even know what I'm even really feeling.
Just wondering if anyone to give me any insight. I'm not pitying myself or anything; I'm just a bit confused as to what's really going on.
Try not to drive yourself nuts wondering what it is. Auto immune diseases can take a while to DX.
Just bring some sort of notes with you at your appointment as it can be overwhelming trying to remember things. Your rheumatologist will run a lot of blood tests and look at your joints, etc.
I wish you luck, and hope you get to the bottom of your issues soon.
rheumatological diseases have a lot of overlapping symptoms, which is one of the reasons they are so difficult to diagnose. If for example you actually have Juvenile Rheumatoid Arthritis (based on the age of your first pain) you will have some but not all of the symptoms of adult onset/ Primary Sjogrens Syndrome or Reiters could also account for your symptoms.
Spend the next several weeks keeping track of your symptoms..write them down. Also write down as much of your medical history as you can remember...whether you went to a doctor or not. Sometimes it is the littlest of things that seperate diseases. I say write them down before the appt because it is way too easy to forget things when in the doctors office
good luck
First, welcome to the board Second, I think you should just tell the RD everything that you've said in your post. It seems to me that I've read that Lyme's disease can linger for quite a long time so maybe that is a factor in what you've been experiencing. I hope you'll stick around and let us now how things work out for you, I know I'll be interested to hear what your RD has to say. Hope things work out for you, Daly.Welcome to the board. You said you had Lyme Disease. Was that the
Dude,
First thing I'd do is check out the Lyme boards. Lyme is curable. And there is a big split in the medical community on how to treat it. I know my AP doc (Antibiotic Protocol) is convinced it's hard to cure and takes more than 21 days of antibiotics. Check out www.lymenet.org. They are the LLMD's.
Next - check out www.palindromic.org. A lot of what you describe sounds like one of us PRA'ers.
Get X-rays. See if you have any damage yet. If not, go back and check out the PRA people again. :-0
Get a copy of the current tests. What liver damage? If all he did is a Liver Function test - then the 'damage' may be temporary.
Next thing is make the list of what's going on and as far back as you can remember. If you have had the same doc for a while; get your records and look over it yourself and bring a copy to your appt with the rheumy.
I never had morning stiffness. I got progressively worse towards night. I had the neuropathy. And the non-symetrical stuff (common for PRA). Nor did I have swelling - but boy did I have pain.
Welcome to the board!
Hugs,
Pip
P.S. I suggest AP. :-) But I always do.
Hi Dalyinx, sorry to hear you have been in so much pain. I am sorry to hear that you think all those non-Ra pains are not RA, as believe me they are RA related as many others here will tell you. I know sometimes its easier to be in denial than to accept facts. My hubby is one of those . He has been diagnosed with Ankylosing spondylitis but refuses to accept even though his spine has started to fuse. A lot of damage can occur to your joints if left untreated and the medications although seem scary, can give you a quality of life you never knew. All the best. AllyHi Dalyinx!
So sorry you have been going thru so much B.S. Alot of the symptoms you listed for NON RA is alot of symptoms I have and I have RA. I get muscle pain and cramps in my calves alot and in my thiegh. My pain is more dominate on my left side and it varies. I describe it as being random like tag teaming. Also RA can cause nerve damage and the chest problems could also be ra. It attacks your organs too like your lungs and heart. I have had pleurisy & pericarditis a couple of times which is ra. SOOOO, I think you need to copy your post and take that to your dr on the 21st. I wish you the best and I hope you can get things figured out soon and get on to feeling better. Keep us posted after your dr visit.
take care