I am in the process of getting several blood tests, x-rays and MRIs done to find out what the heck is wrong with me. I thought it was RA but my Rheumy disagreed and ordered enough tests to keep me busy for the next couple weeks. So while I'm waiting my nurse calls me as each test comes in to let me know the results. A couple days ago she called to say the x-rays of my feet were positive for arthritis but my hands and wrists came back normal. My wrists and hands have been in severe pain for months. Most days I can barely brush my hair, cook dinner, or anything else that I have to use my hands, driving too :( So I KNOW there is something wrong with them. Is this common in Lupus? Anyone else have this problem?
I think most of us with joint pain know exactly what you mean when you say most days it’s hard to brush our hair, cook dinner or anything else - so yes, a lot of us are having this problem. I’ve never had x-rays to check for arthritis damage to be honest with you so I would maybe think that No, Lupus doesn’t cause the same sort of deterioration affect that RA does. Really just based on the fact that my doctor has never found it necessary to do an x-ray of my hands and if he was worried about damage I’d hope he’d do one! LOL. My hands have always been the area on me most affected on me even on good days I have issues with my hands.
Thank you. See I know I have had Lupus for at least 7 years now. Part of my problem has been from bad doctors who just say OA without x-rays or even looking at them. The other problem was due to not having medical insurance for 3 years. My new Rheumy ordered x-rays, MRIs, and several blood tests. Still waiting for the ANA test, that was sent to California. I never believed the OA diagnosis because I was too young.
My technical dx is psoriatic arthritis, but was told the more common form of PsA is the same as SLE arthritis (Which os why the dr always goes back to SLE when I develop something new). So this is from my experience with PsA technically speaking. Initially I had repeated issues with tendinitis in my hands which they decided to xray after about the 6th time in one years. Xrays showed demineralization around the joints in my hands. This is apparently caused by the increased blood flow due to inflammation. The xray tech recommended a bone scan be done to confirm arthritis. The complete bone scan showed arthritis in almost every joint. At the time I kind of thought they were a little crazy since I only had pain in my hands. Took a few years for the other joints to become an issue. Perhaps you can get the doctor to do a bonescan, since it seemed to show the arthritis in it’s very early stages? Also, at least for me, most of my pain comes from tendon and muscle inflammation. Maybe that is what’s going on with your hands?
Hope they get you sorted out soon so you can get a treatment started that will help.
Thank you! It's so nice to hear from real people with this. I think I have read almost everything on the internet. I even found a connection between Lupus and Sciatica. I have had 3 epidurals for it and it's still hurts. I am going to a Neuro Surgeon this morning to see if he can do anything for it and to talk about my seizures bothering me again. I had seizures as a kid and only a few as an adult but the last couple weeks they are back. Just peti-mal so far. I will ask my Rheumy about the bone scan. I am getting an MRI on my hands and wrists today. It's going to be a busy day but 2 steps closer to an official dianosis and hopefully the right treatment. So tired of the pain.
Thank you Ann :) And I understand the sleepless nights. I have a nook e-reader with a little book light that gets me through my sleepless nights. Lately, on top of the pain, I get myoclonic seizures. It's like hic-ups in my legs and arms. They kick and thrash and there is nothing I can do to stop it. So when I finally doze off I get woke back up by them. I have to put space between me and my husband or he wakes up with bruised legs from me kicking him all night. It also happens in my upper body too. It's like having a grand-mal seizure while still awake. During the day I make sure I don't have anything hot or breakable in my hands. It's comical when I throw things unintentionally. I went the the Neuro-Surgeon first thing this morning and he wants me to try phscial threapy first. He said he can't do anything for my seizures and that I need go to a nonsurgical neurologist for that. So his office is referring me for that appointment. My poor husband was so disapointed. He just wants me well now. He's not a patient man and he gets so confused with all this medical stuff. I have to remember to speak to him in layman's terms so he can understand. He can't believe how many doctors it takes to get answers. I have lived with my "relative" Aunt Pain for 21 years now. I call her a relative cause you can get rid of a bad "friend" but you are stuck with a "relative" for life! :) Although, I did get rid of "Aunt Flo" last December with a Total Abdominal Hysterectomy. Boy was I glad to see her go! I have never heard of getting nerves burned. Sounds like something I may want to look into. I have an MRI appointment for my left hand and wrist in a couple hours. First of about 4 MRIs. Somedays I just wish life had a fast forward button.
Hope you can get some sleep soon. I will pray for you too.
I have had lupus since I was 10. Yes lupus does affect your joints like RA. My hands are deformed from all the joint swelling and pain. I cannot straighten my pinkies and my middle finger On my right hand. My right wrist is messed up. Two of my wrist bones have shifted forward causing me to have tremendous pain but this will not stop me. I need my hands because i like to bake cakes, decorate cakes, quilt, paint, draw, scrapbook, and I teach special need pre-k. So my hands are important. Just take care of yourself.
Thank you! It’s so nice to hear from real people with this. I think I have read almost everything on the internet. I even found a connection between Lupus and Sciatica. I have had 3 epidurals for it and it’s still hurts. I am going to a Neuro Surgeon this morning to see if he can do anything for it and to talk about my seizures bothering me again. I had seizures as a kid and only a few as an adult but the last couple weeks they are back. Just peti-mal so far. I will ask my Rheumy about the bone scan. I am getting an MRI on my hands and wrists today. It’s going to be a busy day but 2 steps closer to an official dianosis and hopefully the right treatment. So tired of the pain.
I guess I just want what most undiagnosed people want, diagnosis! It brings so much peace of mind when you know what you're fighting. I have been waiting for 7 years now. Now I am unable to work, take care of my family, take care of myself. I used to love to knit and crochet, cook and bake, design databases. Now all I can do most days is read until I get my daily migraine.
My pictures remind me to look to nature to find some joy. I hope they will make others smile and receive a little joy too :) Animals never fret or worry like we do cause they know it is all in Allah's hands.
I have the same problems with my hands and feet. There are days that I would rather crawl than have to walk, my feet hurt so bad. I have had X-Rays and MRI done and they have found very little damage to my feet or hands. My fingers are showing a little sign of RA now. I know what you are going thru with. I have to have my husband help dress me and drive at times for me. The simple things have become the hard things in life for me. The doctors can not oe will not just tell me that I have SLE or RA, they have told me that there is too many things wrong with me to just pin it down to one thing. The doctors are calling it Mixed Connective Tissue Diease (Which translates to we have no ideal what to do with you or how to treat you.) I am having a times finding a doctor just to treat me for the common flu, cold, diabetes.... I tis a struggle but we must take it one day at a time with GOD.
Yes, I have less joint pain since my rheumatologist started me on predinisone. I used to have severe pain in my wrists, and sometimes in my lower arms. Occasionally in my knees, too. I was told that the form of arthritis that comes with Lupus is RA.
I ended up in the ER Saturday night having seizures. Some A**hole doctor told my husband I was just faking it cause between seizures I was crying that my back hurt and I couldn't breath. My husband got pissed cause he knew I wasn't faking it. They sent me home with a script for phenobarbatol and told me to see a neurologist. I have very vage memories of the whole event. I don't even remember coming home. Now my busband won't let me drive and has confined me to the bedroom while he is at work. I just want to feel human again. My lower back is still killing me.
I am so sorry to hear that the doctor was that way towards you. I have found that they really don’t understand the diease and they are really scared to treat anyone with it. I am having problems with my knees and lower back now. I am going to see a new doctor this week, hopefully she will be willing to listening and try to understand and help. Just hang in there and don’t give up. We all need each other to help make it thru the tough times.
That is ridiculous Jenny! Did they think you were faking the seizures too? If so perhaps you missed your calling and should have a line of Emmy awards on your mantle!!! Some doctors are idiots!!! I am so outraged that in the midst of seizures a doctor would think you had the forethought to “fake” other symptoms. My daughter had a grand-mal at 12 and she didn’t even know who I was for about 20 minutes afterward. Just ridiculous that a “doctor” could think that!
I have researched the arthritis in PsA (what I was dx with) and Lupus arthritis, trying to figure out why after a dx the doctors kept going back to Lupus. Both of the general forms of these arthritis are classed as non-erosive inflammatory arthritis. (three classes of arthritis are: inflammatory which is autoimmune, degenerative like OA, and reactive like Gout).
Now that being said, it is possible to develop other arthritis along side of this. OA for example is a degenerative arthritis that happens from wear and tear. As you can imagine, an inflamed joint can wear out quicker than normal. RA is a completely separate autoimmune disease that is destructive to the joints. As you have seen, many people have overlapping autoimmune diseases. Lupus arthritis by itself is not generally damaging (keep in mind there are always subsets of these as well).
One of the criteria for diagnoses Lupus is “Arthritis: Non-erosive arthritis of two or more peripheral joints, with tenderness, swelling, or effusion”
There are cases of erosive arthritis in Lupus as well although it is less common. I wasn’t able to find a percentage for you. There are tons of articles found online pertaining to the arthritis in Lupus. It’s a very interesting topic!
Some of the articles I’ve read have stated that the non-erosive types are more painful, can have little to no swelling but also inflame the tendons and muscles surrounding the joint. In some cases, long term inflammation can damage the tendons making the shorter which can cause deformities such as “swan neck”. I’m not sure if I believe that though since the twisted joints look very painful to me!
Anyways… My point before the ramble was that I’ve had non-erosive inflammatory arthritis for 15 years give or take and have very little deformity. My middle fingers are slightly turned (middle knuckle turning inward very mildly). This I have been told is from the tendon inflammation. Don’t stress out about the possible problems…you’ll drive yourself crazy!
Jenny Lynn said:
Thank you Kristie and Ann,
I ended up in the ER Saturday night having seizures. Some A**hole doctor told my husband I was just faking it cause between seizures I was crying that my back hurt and I couldn’t breath. My husband got pissed cause he knew I wasn’t faking it. They sent me home with a script for phenobarbatol and told me to see a neurologist. I have very vage memories of the whole event. I don’t even remember coming home. Now my busband won’t let me drive and has confined me to the bedroom while he is at work. I just want to feel human again. My lower back is still killing me.
Gods, this is terrible, Jenny! I can only imagine how you feel about all this. Go to your rheumatologist or other MD, maybe they can help. I have recently read that overuse of antibiotics can cause damage to the ligaments. I had a horse where I believe that happened, there was no reason why his back was so sore except that for almost a year he was on antibiotics when he was a baby. I later read an article that certain antibiotics can cause damage.
Just know that we are here at least to sympathize with you on this. Have you ever tried (darn, now my memory goes kerplunk!) you know, where they use those really small needles on the nerves? Maybe someone else can remember what it is called.
Jenny Lynn said:
Thank you Kristie and Ann,
I ended up in the ER Saturday night having seizures. Some A**hole doctor told my husband I was just faking it cause between seizures I was crying that my back hurt and I couldn't breath. My husband got pissed cause he knew I wasn't faking it. They sent me home with a script for phenobarbatol and told me to see a neurologist. I have very vage memories of the whole event. I don't even remember coming home. Now my busband won't let me drive and has confined me to the bedroom while he is at work. I just want to feel human again. My lower back is still killing me.
