I finally heard back from my doctor yesterday regarding the blood work that was done over a month ago testing for Rheumatoid Arthritis. The tests showed that certain things were “high”, but not definitive enough to state that Rheumatoid Arthritis is the problem. However, because it was inconclusive, I have been referred to a specialist and have an appointment on Wednesday. I am so relieved, you have no idea.
After have done some research on the type of specialist, and reading what I could, I have learned a few things. The problem that I am having is not going to be easy to diagnose, and it may take several visits and trial/error things before we know what’s causing my pain and can look for a solution. Rhuematologists do more than arthritis – they do an extra three years of medical training in the diagnosis and treatment of joint and soft tissue maladies. In addition to arthritis, they also are “experts” in things like fibromyalgia and tendonitis.
Needless to say I am thrilled to finally get to a doctor that is going to understand the pain that I have and is hopefully going to be able to help find solutions to help relieve it. Also, somewhat needless to say, I am in the market for a new primary care physician. The length of time it took for my doctor to get back to me and refer me to a specialist was unacceptable. She had my test results on June 30th, and signed off on them at that time. Yet it took another full month for an assistant – not even her – to call me, and only after I called to inquire about them (and even then it took another three business days before I was called). This was the last of many things that have drove me to this decision, but it was the one that finally pushed me to make a change. As such, if you happen to know of any great doctors in the Seattle/Redmond area, I’d love to hear about them. I got a few great suggestions from Twitter yesterday that I’m checking out, but I want to explore all of my options!
As for my hands, I took a picture this morning. It’s a little hard to see some of the swelling – but I thought I’d let you see what you could (and if nothing else, you can look and go “god Beru, manicures – have you heard of them?!). The swelling is the least in the morning, and only grows worse throughout the day, with the worst being in the evenings, often regardless of if I’ve spent 3 hours or 30 minutes at the keyboard.
So probably the most obvious thing that you can see is the swelling in the knuckles on my fingers. They get so big at times that when I type or do other things with my hands my knuckles actually knock into each other. You can see some of the swelling in the soft tissue of my fingers, but not much. Where I have the sharpest pain is between where my finger meets my hand and that first knuckle.
What is harder to see is that the top of my hand also swells. With the soft tissue surrounding the knuckles on the top of my hand sometimes doubling in size. The top of my hand never has sharp pain, but lately has sometimes taken to have a burning sensation. Sometimes my hands feel very cold and sometimes they tingle just a little, and I’m not even sure that “tingle” is the best description for the feeling. I do not believe that I have numbness.
Advil and the Topricin that I use can stunt the swelling some, but never completely alleviates it.
I never have wrist pain. I never have elbow pain. I never have shoulder pain. It is always only just my hands.
Hopefully I’ll have some answers on Wednesday. Or at least a better way to deal with the pain, and a path/plan to work through what is causing the pain. At the very least I’ll know that we are working on a better solution.
As soon as I learn more, I will offer another update! Until then, you’ll be glad to know that I finally got some video of Heroic Shannox that I’m comfortable using for a guide – even if the riplimb tank died at 8% and his dog ate my face at 2%. BAD DOG! 😉
Falling Leaves and Wings 
In case you don’t remember me, I’m that gal with fibromyalgia. 😉
My rheumatoid blood tests showed that I have the genetic marker for rheumatoid arthritis, which about 5% of the population has. However, my doctor said that just because you have the marker, doesn’t mean you will get it! There are documented cases of it even. When I heard that I was very relieved too! But also, having any diagnosis (as long as it’s true) is also a relief. Cause it means you know what it is, and that you can treat it as best as medicine will allow currently.
When I went to my rheumatologist (6 months later! Damn you, Canadian wait times) they took X-rays of everything. I showed weakening in my finger joints and pelvic/back bones, but no RA yet. Calcium Calcium Calcium! (Actually, even simple calcium deficiency can cause joint pain – I just started on a calcium diet again T_T)
I actually do see the swelling in your upper hands, almost more than the knuckles in that picture. But I can imagine the swelling later. 😦
I’m actually in about the same boat as you are with your doctor. It takes a month to see him, he’s misdiagnosed me, and I feel like I run in circles for him – unintentionally of course, but it still sucks. But I’m loyal to him cause he’s been my doc for over 10 years, and all the other doctors I’ve tried on the side have just scorned me and think that my pain is ‘in my head’. Screw them! Excuse my language. A lot of doctors don’t ‘believe’ in fibromyalgia. I hate it. Sometimes I despair that I will ever get fixed. But I’ve come to realise that getting fixed is not part of having FM. And I just got to deal with it.
Keep at it, stay strong, and get what you want out of your doctor! You have the luxury of having many doctors to choose from – cause the U.S. steals all our doctors with offers of better pay! 😉 hahaha
You WILL get to the bottom of this and start getting treatment. Have no doubt of it. You are in good hands, excuse the pun, with a rheumatologist – as long as they’re reasonably competent, they WILL find out something for you. 🙂
Take care! ❤
I was diagnosed as a child with JRA [Juvenile Rheumatoid Arthritis] and the adult version has recently reared its head [RA]. I actually have little to no swelling.
Mine started in my elbow, leading my primary care physician at the time to diagnose me with tennis elbow. As you observed it took a few visits at a specialist to get a diagnosis. And it took over a year to even get referred to one 😦
Getting an answer on the recurring pain was such a relief, so I totally understand that! You can be pain free again 🙂 And it can even go into remission, so just take it one step at a time 🙂
I do know that for a time, my doctor had me taking aspirin and later an aspirin deriviative [I can’t take it anymore because it irritates my stomach]. And I’m currently on plaquenil.
And yes, as long as you have a good rheumatologist, you are in good hands 🙂
Take care!
Hm… one thing I note, and don’t take this as a slam, please… The skin tone on your hand is pale,, is it possible you could have circulatory issues in your fingers or is that normal for you? My mother once worked with a woman who had that problem, she had different issues from yours, but that doesn’t mean it may manifest the same way. As for the cold and the ‘tingle’, I can get those and I have found that it seems to originate from the shoulders for me… I spend TONS of time on the computer too, so when I get that I just get up for a few and do big arm swings from the shoulder in both directions to help loosen things up, it does seem to help me. I even roll my head and neck too, just because of the head-neck-shoulder connection.
I am glad you are seeing a specialist on it! I don’t have the pain you do, but my mother does in her hands and hers are swollen worse than yours.. my grandmother, too. I kind of hope I have enough genetics from Dad’s side to avoid that problem later on.
*hugs* good luck with finding a good doctor – it really does make all the difference. Best wishes (and ps, your nails look perfect to me – I should really send you a picture of well, where my nails are supposed to be to make you feel better 🙂 )
I know what it’s like to have pain, and now know the cause of it, I personally have had migraines every waking hour of every day for the past two years. It is worse than it sounds, and it sounds pretty bad. I’ve been to over 5 different doctors, two MRI’s, and a myriad of drugs to solve the issue I don’t even have a name for yet, to no avail. I can imagine how nice it is to say, oh, it might be this, so we can do this to treat, I wish my doctors would tell me that 😛
Best of luck figuring it out, hope you find something to help!
This might sound weird.. but have you tried using Yelp.com to look up reviews on doctors? More and more people are using Yelp to rank things than just food. It’s pretty fascinating. 🙂
I believe you’re in Seattle.. here’s a link to Yelp’s Health and Medical session for that area: http://www.yelp.com/search?find_desc=&ns=1&find_loc=seattle%2C+wa#cflt=health
Good luck!
Everybody seems (A) to be giving you advice and (B) share stories of recognition, i feel a bit left out because (A) i have no advice to give you and (B) i don’t know anyone who has something that even remotely resembles what you have.
So that leaves me with a “good luck on your IRL quest to figure this thing out and make the pain stop” – i hope that counts for something aswel 😉
PS doctors are a bit like laywers.. howmany does it take to do a proper diagnosis 😛
I’ve read about your painful hands before (I’m a bit of a lurker here) and it sounds pretty awful. I do know pain because like Juulna I have fibromyalgia (I second her opinions on doctors not quite understanding pain diseases) – but fortunately it doesn’t effect my hands, so I can play WoW (as long as I don’t sit for too long in one position and use a good chair) without worrying.
I hope that the specialist can help you, because it’s frustrating not knowing what’s wrong with you (took them 3 years to figure it out for me, though possibly because I managed to have a “burn out” which probably set it all off – and the symptoms are very similar). I sometimes feel that it is worth not knowing than when you finally find out and know that you’re not insane – there really is something wrong; and this is what can be done about it.
Good luck with everything 🙂 (Can’t really help with doctor recommendations cause I’m in the wrong part of the world hehe)
Hang in there 🙂
Frig, yeah! Doctors took forever with my diagnosis. I had been going in for years with a ‘stomach acid-like problem’ (Stomach irritability is quite common in FM patients cause of the effect on the nervous system) and lots more pain from injuries than I should have been getting. They didn’t catch it until my doctor accidentally poked me in a trigger spot and I almost reflexively hit him.
But hey, I’m starting to get better. A lot better function than my first year of real bad pain and sleep. Had to quit school for a term, then I went to part-time… but now I’m graduating with a kick-butt Honours degree on time! woooooo. Yay for beating the disease!
If I can do it, you can too Beru. You’re so much more of a go-getter than I am haha.