I was wondering if anyone here has been diagnosed with both? I have lower back pain, but never had any X-ray that shows any degenerative changes. My rheumatologist mentioned last Thursday (over a phone appointment) that he thinks it is osteoarthritis in my lower back.
I have significant morning stiffness of my ankles, knees, and left middle fingers in the morning. But never does any X-Ray show any changes in the joints. He has mentioned poly arthritis to me several times.
The last blood work I had, he says they don’t any active inflammation, and that is great! But I was feeling really good on the day it was taken. I have more of the same bloodwork in three months , and every 3 months for the next year.
I am just tired of not knowing what is going on. One minute it is this, then something else, then it back to what I was told in the first place. It has been 30+ years that I have been in the dark. I have been told by the rheumatologist that I have lupus with a blood clotting disorder. (He was assigned to me while I was in the hospital, and told me I had 8 of the 11 criteria for lupus - something I had never heard of before my sister and aunt had kidney trouble because of it.) The other specialists don’t get along with this one doctor, so they tell me, really, what I have is “ bad luck”. I am ready to give up. I have had 9+ pulmonary embolisms in the past year and a half. I have had new clots on blood thinners and while wearing thigh high compression socks every single day! Bad luck?
Sorry. I don’t usually vent about this or talk about it to anyone, but I have just about had it. I am seriously at the point of just stopping all my medications. Blood thinners, Plaquenil, pain meds etc. the pulmonologist I see was saying he doesn’t even know why I am being given Plaquenil, because the rheumatologist is giving me such a low dose ( I take 200mg in the morning, and 200 at night). Ok fine. I have researched it all and none of these drugs are prescribed for bad luck. 🤷♀️🙄 So, yeah, why take them?
Bad luck - I don't know where to start. I think the worst of your luck is crossing paths with doctors that don't want to look outside of the box. Also, as far as osteoarthritis, it shows up on x-rays, MRI, etc. So my thinking is your pain is more lupus related, but some others may know more. I know that my rheumatologist gives a form to fill out and specifically says not to include any back related pain which I don't understand at all. Your blood issues are really concerning. Have you seen or consulted with a hematologist? Also, I don't think your dose of Plaquenil is so low.
I am going to vent a bit myself here for all of us. I am thoroughly disgusted with how so many doctors just brush patients off if they don't know the answers in the labs they've run or films. I have appointments this week and am already dreading them because I will most likely leave and feel no better if not worse afterwards. Even if they don't know, a little compassion would be so helpful. Wishing you all the best and will keep you in my thoughts.
Hopeful and healing hugs.
It is a beautiful day out today and I went for a walk. I am in a much happier mood now. I promised myself not to let all of this of the past year bother me so much. I guess I am just tired after so long and not having any concrete answers.
I have a problem with chronic anemia. So, they recommended that I get a hysterectomy last October. And this week, I find out my anemia is back and worse than ever. It is just so frustrating.
I agree completely about doctor these days. My team (since having the blood clotting issues) are pulmonologist, rheumatologist, hematologist, gynaecologist, and vascular surgeon. The pulmonologist leads every thing because my lungs have been hit the hardest with the clots. He told me in his office that my blood work shows no hereditary markers and so no lupus - the blood tests and x-rays are negative so not possible. Maybe he means APS? But is saying lupus for both disorders? I read that no one blood test can diagnose lupus. I have a strong positive ANA (1:640 speckled atypical). 🤷♀️
What is your dsDNA? . no hereditary markers for lupus have been found yet .I'm pleased you feel better after your walk.x
I have never seen the results but my pulmonologist said it was negative. I have high c- reactive protein and sedimentation rate. That and the ANA was positive . I have always had high ANA (since I was 16), C-reactive and sed rate. Maybe that is why the pulmonologist said it is bad luck and not lupus?
Do you not ask to see them ? Bloods are usually documented in gp letters which I get a copy of here in the UK.crp and sed rate can be elevated in lupus .whilst people with lupus have a positive ana result a percentage of the population have a positive result without having lupus 🤷♀️ x
In Canada you don’t get a copy unless you go to the hospital and ask for it to be mailed to you. Most of the time, you get tests done and see the doctor and they tell you what is what.
My rheumatologist told me in the hospital that ANA is high and that with the meeting so many of the criteria, points to a diagnosis of lupus and that I probably had it when I was younger, it just wasn’t diagnosed. 🤷♀️
We can asked to be copied into letters here.pity your rheumy isn't your primary consultant.i have lung issues and see a chest specialist i also have lupus nephritis but my Rheumatologist is still my main consultant xx
It would be great! I just am going to live my life (like I have for the last 30+ years) and accept that sometimes things have no concrete explanation. 🤷♀️ Bad luck it is. ☺️
Have they looked at Factor five Leiden , or sticky blood. It is inherited , my husband two daughters and granddaughter have it
I don’t know…in the hospital they took like 20 little tubes of blood. 🤷♀️
My Rheumatologist wrote to my GP as I had been on Steroids for so long and requested a bone density scan. I have one on June 1st on NHS
Good luck with your bone density. I have osteoporosis and have been on multiple meds. I have had fractures - some from falls and a car accident and a few not sure why. Another thing to deal with.
Healing hugs.