Aa
33 yr old Female - Arthritis and Fed up!
The docs think I'm crazy and shrug me off.
2 years ago, a few days after my grandfather passed away, a DIP joint on my right hand became tender. It very slowly worsened and a few months later I could see where it was swelling slightly over the joint (if I applied pressure or stretched my hand it would blanch and turn white over the knuckle). It was always just "tender" when it was pressed or knocked against something, it didn't really hurt to move it unless I very forcefully balled my hand up into a fist, then it would hurt.
It progressively hurt worse and swelled, and a year ago I went to a doctor who took an X-ray. He said there was absolutely no bone or cartilage damage but he "guessed" it was arthritis.
Fast forward to this past summer and my finger began to deform. The top (DIP) joint bends downward (to my palm) and I am unable to straighten it, it is able to be forced back into position and doesn't hurt to bend it back and forth slightly. If anyone knows what a "mallet" finger injury looks like....it's *exactly* like that.
If hurts TREMENDOUSLY to hit it or knock it into something (like when doing laundry) and hurts to bend it moderately and to make a fist. These past few months I have noticed that both hands are stiff and I have lost a lot of my mobility, I used to have extremely good flexibility in my joints and it has been greatly reduced. Some days my first 3 fingers on that hand swell and become very hot, my index finger and ring finger are now showing the exact same signs that my middle finger started with. They're following the same path. On days when I use my hand a lot, sometimes those fingers get extremely cold to the touch and my nails have turned blue before,...but most of the time when they flare up they become hot to the touch.
I've never had an injuries or psoriasis (I don't think it's psoriatic arthritis). No other joints hurt like this, except on occasion I do have problems with my shoulders hurting and symptoms similar to Thoracic Outlet Syndrome.
They've checked my C-RP three times and the results were 9.3, 11, and 1.8 and my Sed Rate was checked twice and the results were 25 and 6.
Rh-Factor and ANA were both negative.
The doctors now think I'm utterly insane and have all passed it off as Osteoarthritis. And maybe it is, I just don't know, I can't get any of them to talk to me about it or really listen to me. It doesn't "feel" like I think OA would feel like, it doesn't hurt to move my fingers in normal, everyday movements. It feels more like soft-tissue damage and pain, I suspect my deformed finger is because the tendon and surrounding tissue have been constantly inflamed so long that the tendon is no longer able to support the joint. I don't think the deformity is because of inflamed bone causing the joint to bend forwards.....I'm able to straighten the joint with my other hand just fine, but when I let it go it just flops back down.
I've been to 2 General Family doctors and 1 Rheumatologist about it specifically and mentioned it to my Allergist/Immunologist and my Mitral Valve Prolapse specialist. Everyone suggested I go to see the Rheumatologist and the Rheumatologist shrugged and said it was just OA and to go back to my other doctor.
I'm at my wit's end.....does anyone have something similar or advice? I don't know which doctor to see now and my nerves are frazzled,.....it's getting much, much worse and the other fingers are doing the same thing. If they get as worse as my 1 DIP joint on the middle finger then I won't be able to use my hand in about a year.
Thanks in advance for any help or advice!!
I am slightly anemic.
2 years ago, a few days after my grandfather passed away, a DIP joint on my right hand became tender. It very slowly worsened and a few months later I could see where it was swelling slightly over the joint (if I applied pressure or stretched my hand it would blanch and turn white over the knuckle). It was always just "tender" when it was pressed or knocked against something, it didn't really hurt to move it unless I very forcefully balled my hand up into a fist, then it would hurt.
It progressively hurt worse and swelled, and a year ago I went to a doctor who took an X-ray. He said there was absolutely no bone or cartilage damage but he "guessed" it was arthritis.
Fast forward to this past summer and my finger began to deform. The top (DIP) joint bends downward (to my palm) and I am unable to straighten it, it is able to be forced back into position and doesn't hurt to bend it back and forth slightly. If anyone knows what a "mallet" finger injury looks like....it's *exactly* like that.
If hurts TREMENDOUSLY to hit it or knock it into something (like when doing laundry) and hurts to bend it moderately and to make a fist. These past few months I have noticed that both hands are stiff and I have lost a lot of my mobility, I used to have extremely good flexibility in my joints and it has been greatly reduced. Some days my first 3 fingers on that hand swell and become very hot, my index finger and ring finger are now showing the exact same signs that my middle finger started with. They're following the same path. On days when I use my hand a lot, sometimes those fingers get extremely cold to the touch and my nails have turned blue before,...but most of the time when they flare up they become hot to the touch.
I've never had an injuries or psoriasis (I don't think it's psoriatic arthritis). No other joints hurt like this, except on occasion I do have problems with my shoulders hurting and symptoms similar to Thoracic Outlet Syndrome.
They've checked my C-RP three times and the results were 9.3, 11, and 1.8 and my Sed Rate was checked twice and the results were 25 and 6.
Rh-Factor and ANA were both negative.
The doctors now think I'm utterly insane and have all passed it off as Osteoarthritis. And maybe it is, I just don't know, I can't get any of them to talk to me about it or really listen to me. It doesn't "feel" like I think OA would feel like, it doesn't hurt to move my fingers in normal, everyday movements. It feels more like soft-tissue damage and pain, I suspect my deformed finger is because the tendon and surrounding tissue have been constantly inflamed so long that the tendon is no longer able to support the joint. I don't think the deformity is because of inflamed bone causing the joint to bend forwards.....I'm able to straighten the joint with my other hand just fine, but when I let it go it just flops back down.
I've been to 2 General Family doctors and 1 Rheumatologist about it specifically and mentioned it to my Allergist/Immunologist and my Mitral Valve Prolapse specialist. Everyone suggested I go to see the Rheumatologist and the Rheumatologist shrugged and said it was just OA and to go back to my other doctor.
I'm at my wit's end.....does anyone have something similar or advice? I don't know which doctor to see now and my nerves are frazzled,.....it's getting much, much worse and the other fingers are doing the same thing. If they get as worse as my 1 DIP joint on the middle finger then I won't be able to use my hand in about a year.
Thanks in advance for any help or advice!!
I am slightly anemic.
Hi I really know how you feel !!!! About 8 months ago my pinky finger started swelling.It would swell so much that I couldn't even bend it anymore.I went to my family doctor and he advised me to see a hand specialist. He referred me to one and I went to see him the following week.. I told him how my finger is ALWAYS swollen and I can hardly bend it.If you touch the middle joint it is very tender. I also explained to him that it is sore to the touch and If I bump it on something the pain goes right through me.This doctor took x-rays and proceeds to tell me my finger isn't broken. ( I knew that before I went to him) Keep in mind this is a hand specialist. He then said to me well it isn't broken I think you jammed your finger. I told him I didn't jam my pinky finger because I would remember if I did. He then said I jammed it and just don't remember doing it. At that point I had nothing to say. ((VERY FRUSTRATED ) I had to pay for this office visit because I have pretty bad insurance. he gave me some Daypro (anti inflammatory) and sent me to physical therapy. I went twice and stopped going because IT WASN'T DOING ANYTHING FOR MY PINKY.And it cost alot of money for nothing. they also made a splint for my pinky that cost me 120 dollars. ( two little pieces of half circles of plastic) I then went to another hand specialist and he took bloodwok for arthritis,everything came back negative. He sent me on my way with more scripts of Daypro. Still having problems with my pinky but I feel very frustrated and defeated with the doctors. Quit taking daypro because it was bothering my stomach and really didn't do much anyways. Hope someone has some advice. Not much confidence in the doctors.
Sorry to read it is spreading. Sometimes an advancement in the symptoms is what it takes to get a doc's attention though. Sort of a silver lining. Keep after the docs. You will either find one who listens or wear down one you are seeing :)
Thank you all for your advice and support! It just gets so frustrating!
Right now I'm just doing what I can to keep the inflammation down, putting cold packs on my hand when they get red and puffy and taking breaks after typing for awhile.
So far it had only been my DIP joints that were affected, but recently my middle joint (PIP ??) on my index finger has been aching and hurting when I use it. I'm just going to keep pushing until I find a doc who will listen!
Thank you all!
Right now I'm just doing what I can to keep the inflammation down, putting cold packs on my hand when they get red and puffy and taking breaks after typing for awhile.
So far it had only been my DIP joints that were affected, but recently my middle joint (PIP ??) on my index finger has been aching and hurting when I use it. I'm just going to keep pushing until I find a doc who will listen!
Thank you all!
See question in this arthritis forum by denised508 on 4-7-09: What Can I Do? Psoriatic Arthritis/Fibromyalgia
Please, do check out the suggestions. Continue to keep us posted, and continued best wishes to you.
Please, do check out the suggestions. Continue to keep us posted, and continued best wishes to you.
I know just how you feel. Doctors have been just blowing me off for 10 years. I have been diagnosed with Rhem Arthritis and have been treated for it for 5 yrs. Before that I was sent to every Dr. imaginable. I have had some weird stuff going on. I even made several trips to ER thinking I was having a heart attach. If something is not in thier specialty, they don't want to even discuss it.My sed rate has always been normal (it doesn't matter how I feel or are hurting) except when I was referred to him. It was very, very high. I recently got fed up with my Rhemy and changed. The new on immediately diagnosed me with fibromyalgia. He thinks that I probably do not have RA. I have been taking methotrexate for several years and now there is a problem with my liver enzymes, so the Dr. is stepping me down on the meds. Maybe you should try another Rhemy. If I don't get some satisfaction with this Dr., I will be switching again. Good Luck and keep trying to find someone who will listen to you.
You really have been through it! It is hard to keep going on but I applaud your tenacity! Keep it up! We will try to help and support you any way we can. Did you happen to look at the post about first rheumy appts? There may be some helpful information there. I am glad you found us and hope you will get answers soon!
I forgot to thank you for your support! It's so easy to give up...I just don't know which doctor to go to anymore. I can't get a single doctor to really listen to my symptoms, they pick up on just the basics (like "Negative tests" "Joint Pain", it's nothing but OA). I've seen 11 doctors including 4 specialists in 5 months and I'm pretty frazzled. But I'm going to keep pressing them until I get an answer!
Thank you!
Thank you!
My last X-ray was a year ago in December, 6 months before it started deforming. I haven't had one since then, all the doctors I see told me that I needed to see a Rheumatologist, so they didn't want to do any furter tests until I was seen by a Rheumatologist. Then the Rheum. rudely told me it was "just OA" and now I'm back to square one.
I saw a neurologist 3 months ago and had a brain MRI, EMG, and Nerve Conduction study of my legs and feet. All negative, so he sent me back to the other doctors. Part of that's why I'm so frustrated, my doctors keep referring me all over the place and no one seems to want to be the one to diagnose me.
The blue discoloration isn't in response to cold, the fingers with the worst symptoms sometimes turn cold and the fingernails turn pale purplish-blue when I've used my hands a lot. First they get hot, warm to the touch, and inflamed.....then they turn cold. To me it's almost as if the swelling starts to restrict the circulation so they go from hot and swollen to pale and cold. But it's just certain fingers, usually whichever ones are having the most problems that week.
I saw a neurologist 3 months ago and had a brain MRI, EMG, and Nerve Conduction study of my legs and feet. All negative, so he sent me back to the other doctors. Part of that's why I'm so frustrated, my doctors keep referring me all over the place and no one seems to want to be the one to diagnose me.
The blue discoloration isn't in response to cold, the fingers with the worst symptoms sometimes turn cold and the fingernails turn pale purplish-blue when I've used my hands a lot. First they get hot, warm to the touch, and inflamed.....then they turn cold. To me it's almost as if the swelling starts to restrict the circulation so they go from hot and swollen to pale and cold. But it's just certain fingers, usually whichever ones are having the most problems that week.
I am sorry you are having such a frustrating time getting diagnosed and treated. While it is possible you have OA with a contracture, just because you tested negative for other conditions does not mean you do not have them. You can test positive for things you don't have and negative for things you do.
When were your last x-rays? Have you seen a neurologist? Because you're able to straighten it manually, it may not be a joint issue at all.
Your fingers turning blue with exposure to cold sounds like a symptom of sjogren's syndrome. Have any of your doctors investigated that?
Frustrating as it is, you may have to see many different doctors before you find one who can identifiy the cause and treat you. I encourage you not to give up.
When were your last x-rays? Have you seen a neurologist? Because you're able to straighten it manually, it may not be a joint issue at all.
Your fingers turning blue with exposure to cold sounds like a symptom of sjogren's syndrome. Have any of your doctors investigated that?
Frustrating as it is, you may have to see many different doctors before you find one who can identifiy the cause and treat you. I encourage you not to give up.
Thank you for your reply! Yep, I was extremely frustrated with the Rheumatologist. For 2 years every doctor I went to said "Go see a Rheumatologist", and when I finally did his very brief and rude answer was "It's *just* Osteoarthritis and there are no medicines for that. No medicine will work on the bones, so there's nothing I can prescribe you". And that was it! Very frustrating!
You said "Hand" specialist...would that be an Orthopedist maybe? My problem now is that all my regular doctors are tired of referring me to other doctors. But I'm going to keep pressing the doctors until someone listens! :)
I need to find a doctor who will listen. I can't seem to find in depth descriptions of how the different types of arthritis feel and act. Mostly I find short definitions of how they "generally" feel (like RA pain hurting worse in the morning, and OA after using the joint a lot) but nothing really in depth.
Thanks again for your reply!
You said "Hand" specialist...would that be an Orthopedist maybe? My problem now is that all my regular doctors are tired of referring me to other doctors. But I'm going to keep pressing the doctors until someone listens! :)
I need to find a doctor who will listen. I can't seem to find in depth descriptions of how the different types of arthritis feel and act. Mostly I find short definitions of how they "generally" feel (like RA pain hurting worse in the morning, and OA after using the joint a lot) but nothing really in depth.
Thanks again for your reply!
Doctors are so annoying. The rheumatologists especially--They just take these blood tests and if nothing shows up, they slap a diagnosis on you and send you on your way. I don't understand it myself.
What I would suggest is to see a Hand specialist. I went to one for my carpal tunnel. He was OK--I had the surgery, but when I had pain afterwards he said it was *scar tissue.* I didn't like that explanation, but it got better after about a year. But at least he properly diagnosed me.
What you need is someone who tell you what this is. It is certainly more than *arthritis* and it's not normal.
What I would suggest is to see a Hand specialist. I went to one for my carpal tunnel. He was OK--I had the surgery, but when I had pain afterwards he said it was *scar tissue.* I didn't like that explanation, but it got better after about a year. But at least he properly diagnosed me.
What you need is someone who tell you what this is. It is certainly more than *arthritis* and it's not normal.
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