No One Knows

Hello Everyone,

Its good to know there is a place where I can vent. Does my story fit anything in your mind?

I am 24, was very active (military), sustained a hip fracture and healed in May, in December my finger swelled. Just one finger. I thought nothing of it since it when away. In January, my joints began to swell (including the dumb finger) and became painful. Running and excersing were out of the question. Since then, I have had genetic testing, RH testing, allergy testing, and the best my rheumatologist has come up with-is I don't know but take Humira and it may clear up. Since then I have seen an internist, when he saw the battery of xrays, mri, lab tests that i have been through he just shakes his head and doesn't know where to start. I have days that are worse than others. Before Humira, I was on Methylprednisone 20mg a day, then bumped up to Prednisone 30mg a day-that was the only thing that controlled the swelling AND pain. Since Humira-the swelling is gone but the pain is still there. I'm so frustrated that picking up my children has to be a well thought out plan that it breaks my heart. I'm starting to think that my next stop should be a psych. Anyone have any ideas of what I can tell my docs?

Hi SouthTexasgal - I am sorry that you are going through all of this now. First, it can be hard to find a good doctor to figure this out. I would assume they checked you sed-rate and c-reactive protein also. I would think those would have been elevated. There are people that have a negative rheumatoid factor but still have rheumatoid arthritis - I am one of them. For some, the rheumatoid factor doesn't turn positive until later - sometimes never. Usually its a combination of drugs that give the most relief. Its alot of trial and error. Good luck. It took me about a year or year and a half before I was comfortable being on the floor and getting up again. I'm still stiff and hurt some, but am mostly functionable. I wish you well.

Kim

I appreciate the boost of confidence and well wishes. My blood work has always come back within normal range. "perfect" is the doctor's choice word. I actually drive 5 hours from home to see this so called top 10 rheumotologist. I've been treated at military facilities and even the Mayo Clinic. When docs see my lab reports, they assume nothing is wrong. But it the inflamation is visible with no explanation as to why. Then comes the puzzeled look and the becoming the human pin cushion. I am being patient and hoping for the best. I guess I just didn't expect this at my age. Was a bridge that I figured I would deal with later in life.
Have any of you just gotten tired of hearing the doctor say to be patient? Seems to me with all the advances in medicine, they would be able to figure out what it is and fix it fast! Guess we are still a bit behind when it deals to that.

Hi ST girl, I think its the nature of these auto immune diseases, everyone is different and it takes some sort of upset, like an infection or accident to trigger it happening to your body. It's unfortunately perfectly normal to have normal blood work and yet still have symptoms or swelling or both. It's the frustration that most of us here deal with is finding that combination of meds to help. Are you just on humira?

Often you go on humira with methotrexate or prednisone to help with the pain and swelling. My bloods are also normal and I have very little swelling but get a fair amount of pain or numbness when the carpel tunnel is activated. The hardest thing is accepting you need all these meds to control it. I have at times been on combinations that work wonders for me then something seems to happen and I get that bit worse again. Really frustrating.

For you at this early stage don't get down, just keep complaining and eventually I'm sure your rheumy will find that magic potion that your body responds too. There are a lot of meds out there for RA and its associated diseases, there has to be one with your name on. In the meantime, heat really helps, get yourself a wheat pack and heat it up in the microwave, works wonders on sore joints. Warm water also helps, warm spas are great, if I'm swollen at the end of the day I use ice too, helps bring relief when your joints are hot and inflamed. You have to pace your self too, especially in the early stages, its so easy to flare if you do too much. Prednisone really helps in the early stages too but some Doctors are against it because of all the damage it can cause long term. I hate it but love it sort of drug.

I hope you get some sort of relief soon, golitho

Hello SouthTexasGal, and welcome! Sooo sorry to hear about you pain and frustration! I really understand and can relate! I am 44 and have had chronic back pain from and injury for 3 years, but about 3 weeks ago, I woke up with every joint in my body hurting so bad, I could not walk, turn doorknobs, write or even eat! I thought the eating part was related to a very bad ear infection because my ear was hurting sooo bad! Turns out it was the joint in my jaw! Everything was swollen and hot. I do not have insurance right now, so the only test my doc did was a SED rate because it was cheap. My SED rate was 53 which she said was moderate but not extremely high. (normal is under 20) She gave me steroids and said, "let's see what happens" I took my last one about a week ago and now I am starting to get some pain back in my wrists and I noticed my thumbs were achy today. So, I am still waiting and feel like I am still in the dark! I am so scared that the terrible pain I woke up with that day is going to come back soon, but I don't know. So we are kind of in the dark together....please keep us updated and I will also. Keep coming back here, because there are a lot of wonderful and supportive people here and take care of you!!

Hang in there,
Beckey