I am a 31yo mother, wife and health care professional. I sit here at the computer in a lot of pain and few answers. I have felt so distracted from life the last two months due to a cascade of symptoms, pain and fear. I cannot believe the way my life has changed in the preceding weeks and and fear that I will fall victim to the lab value number game. I thought that maybe sharing would help me vent this out and atleast let this out for some immediate relief. I guess I want to hear from someone who has been through "this" and maybe see hope. This is why Im writing this morning...
I noticed in late Oct or early Nov that I had a deep soreness and stiffness in my hands upon waking. I would limp to the shower and feel as if I slept in the floor. I shrugged it off as a long night at work or sleeping in a bad position. The bilateral soreness in my hands progressively lingered longer after waking so I mentioned to a coworker. They mentioned carpal tunnel syndrome and I shrugged it off. I had no assumed risk factors for carpal tunnel or numbness I could remember. I keep it in the back of my mind and looked up some info on it. Read an article about the Phalen sign and sure enough it elicted numbness. Hmmm? I promptly bought braces and pain relievers and sleep in them at night. The pain seemed worse and lingered much longer. I broke down to make a dr appt because I felt like I had the flu and many joints hurt. Met the "nice" dr and he listened and ordered all the right tests (cbc, crp, ana, rf factor, esr, etc..) and told me to kinda be prepared for an RA diagnosis. I explained that I litterally transformed to a 90 yr old woman in 3 weeks. I was so scared at that prospect at 31 with a 18 month old son. I awaited his phone call and then it came....."Well all your labs are normal and I suggest that you begin exercising and what pharmacy do you use? I feel you have Fibromyalgia and see me in one month...bye."
Really??? I read about fibromyalgia and not one word seem to fit with my life. What I read mentioned "chronic pain" and muscle aches. I just didnt understand. I held off on filling the medication. The side effects I read about sounded terrible. Each morning as I swung my legs over to the floor I hoped it would somehow be better....and it never was. I found myself crying in the garage at 5am from fear and pain each morning.
A coworker noticed me rubbing my hands and asked. I shared a little and he mentioned a dr he knew that might have a suggestion. He was great. He reordered labs, gave injections for the carpal tunnel. He noted I had cubital tunnel syndrome as well. Scheduled an EMG and gave me Medrol. He seems to think that something would have shown in the labs if I were having an RA flare and felt it was a slim chance, but reordered them and added an anti CCP.
Im on day three of the Medrol and was hoping for a miracle....I do notice a moderate change in my hands in the morning and a reduction of overall "inflamed" feeling, but I sit here now with no aching just out right joint PAIN and crepitus in at least five joints after only 6 weeks!!! I have trouble changing my little man's diaper and putting on a jacket. I feel as if my shoulders will fall out of socket. I have not slept in the same bed as my husband in a month.....Im 31 yr old!!
Hi, Misty,
Sorry to hear about all the pain you have been experiencing. Since you are a health care professional, you probably have more knowledge than most of us and have all the possibilities running through your head. I know that must be scary.
I am not a healtcare professional and I do not have RA. I have generalized osteoarthritis, inflammatory osteoarthritis and fibromyalgia. I have experienced some of what you are going through.
It is possible, and even seems common, for people to have more than one type of arthritis and/or fibromyalgia. It takes a while to sort it all out. I've been told by some relatives and friends that are doctors, that medicine is not an exact science.
Not all people who have RA have postive labs. Some people have seronegative RA. Rheumatologists generally diagnose RA based on the history, labs, clinical symptoms like swelling etc. The diagnose based on a range of symptoms, and there are criteria for diagnosis established by the College Of Rheumatology.
Do you have swollen joints? Are they red and/or warm?
I am taking prednisone now, and I must say it does help me a lot w/the pain along w/the Tramadol. You mentioned you have had some relief from the medrol pack. That would indicate that you do have inflammation causing pain.
The absolute worst symptom I had besides the intense pain was the fatigue. Once they figure out exactly what is going on with you and prescribe the appropriate medication, you should feel much better.
I know it is confusing and scary. Please don't give up. It will get better. Work with your doctor. You might try keeping a pain log and taking it to your next doctor's appointment.
Please let us know how you are doing. You are not alone. There are a lot of us out here, and we are here to listen and lend support.
Peace,
V
Thank you so much for your kind words.
The last two months for me have been so different. I honestly have a new prespective about living with chronic pain. Some days are emotionally rough. You feel like if you vocalize how much pain you are in that others will start to tune you out and think you are whining. Joint pain isn't always something that others can see. I go to work and go on as if nothing is going on. You would be surprised how healthcare coworkers tend to minimize each others health problems. I have only told a very, very few about the possibility of RA.
I had my emg done to check if there was any nerve damage from carpal/cubital tunnel. Well, to my surprise..I dont have carpal/cubital tunnel syndrome. The nerves in my arms are fine. Thats very surprising due to the fact that in one hand I have what is called the Wartenburg sign. Its a sign that there is a dysfunction of the ulnar nerve and my pinkie tends to stray to the side. The PT that ran the test said that the nerves were "perfect", however, the rest of it is inconclusive and says the numbess is probably coming from my c-spine (c8 nerve). He is recommending a CT of my spine. I left slightly relieved...no surgery on the arms. A feeling has set in now that it is coming from my spine and it is arthritis causing changes. Read a few articles and saw that often RA will hit the hands and c-spine within the first two years of the disease. I have never had back or neck pain in my life and still really dont now?
The medrol was great. I rallied through the week and felt hopeless when I began to feel worse...however, one day, it was like a fog was lifted. The intense pain was gone and no more 3 am wake ups crying and pacing. I still have pain in hands, hips, shoulders, elbows and knee, but I can mange this! The fatigue had gotten so bad that I had fallen asleep while typing a text. I have a lot more endurance these days.
I want to say to whomever may read this, who has RA....I admire your strength and candor. If this is RA, I hope I have the strength to meet each day head on and not the bed.
Hello there!
Happy to hear your fatigue is better and the short course of steroids helped. Seems like there are so many things that can cause pain and sometimes they are difficult for the docs to sort out. A lot of people have RA, Fibromyalgia and Osteoarthritis all at once. In addition to that, people with Fibro and/or Ra seem to have a tendency to have low vitamin D levels. Have they checked your vitamin D levels yet?
Please let us know what you find out, and how you are doing. Dont' forget to take care of you!
Peace,
V