Really don't know what's wrong with me. I'm 42 and historically done exercise 3 or 4 times per week. Over the last 4 years my back has become really stiff and over the course of the last 12 months my legs have also become stiff (knees first but now hips, thighs etc).
Recently had an ultrasounds on my hips and it revealed inflammation where my tendons meet my buttocks. Waiting on results from MRI on my back and an Xray on my knees.
In the last 7 days I've noticed a lot more clicking in my joints also which is worrying me more.
I also suffer from restless keg syndrome and also have left- sided colitis so I have an auto-immune disease history.
Took the blood test for RA and it came back negative.
Advice welcome on what may be wrong with me!!
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Mikeyb123
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Thanks CripLady, I have been investigating seronegative RA, and it could definetely explain my situation. My rheumatologist was actually a bit dismissive of my symptoms when I came back negative for the antibody test but now I have more ammunition and knowledge to go back to her with. Since I last posted I have noticed a lot more stiffness in my hands and ankles, but have also started a pilates class which made me feel a bit better.
look at axial spondyloarthritis, it predominately affects the spine, but also can affect peripheral joints. Was you mri ordered by a rheumatologist?, the reason I ask is you need a stir sequence mri to highlight inflammation. GPS order T weighted MRIs to highlight mechanical causes of pain.
Havd a look at the referral guidelines, if you score 4 or more you’re entitled to their opinion. You can have normal inflammatory markers and be negative for the Rh factor.
Hi Maureen, my MRI is in 7 days time and was ordered by a rheumatologist so I am hoping this time they will be testing for the right thing as I have had 2 in the past (ordered by GPs) and it showed up nothing. Axial spondyloarthritis has been mentioned a few times to me now so I am going to look into that a bit more. Thank you for taking the time to reply to my post.
Clicking in joints is not regarded as significant - it apparently is due to fluid moving in the joints. Don't worry about that aspect.
But the stiffness suggests that the joints may be inflamed, or worn/damaged (so that the muscles are tightening to protect them), or both.... so you need some answers from the investigations.
I have upped my colitis medication (which prescribes an anti-inflamatory drug) and the clicking has got a little better. Still waiting on my results but this forum is proving very useful and informative in the meantime!
Speaking as someone who was diagnosed with RA many years ago, there isn't really a single blood test that can say whether or not you have RA. There is the Rheumatoid Factor test. If positive then you are more likely to have RA but negative doesn't prove that you don't have the disease.You would also be checked for general inflammation using an ESR or CrP test. If either of these is high, then that would point to active rheumatoid arthritis - but many other conditions can also lead to inflammation.
Rheumatologists seem to go more on the overall set of symptoms to decide if you do have RA. They will look at the pattern of stiffness and pain, swelling of joints and study X-rays to see what is happening within the joints.
Are your actual joints visibly swollen? Certainly mine were when the RA was active.
If you haven't already been referred to a Rheumatologist then probably your doctor will want to exclude other possible problems before doing that. I was checked for various infectious diseases initially. Lyme disease? Rheumatic Fever? Etc. When nothing else was found, I was sent to Rheumatology who basically looked at me and said -Yep, RA.
Hi Gordon, nothing is visible swollen however my left knee felt sore the other day which is the first time I actually had to check my stride when walking and go slow. I have increased the anti-inflamatory medication I take since then and the knee feels better now. I have also been tested for general inflatation before I had the test for RA and the results were normal but things have definetly deterioted since then. Lyme disease I always wondered about as my friend has is. I should probably have a test to rule that out as well. Thanks for all of your advice!
I was originally diagnosed with s- negative RA and only recently re diagnosed with axial spondyloarthritis and have all your symptoms. There is a national axial spondyloarthritis site which NRAS recommended. It’s very good and explains it perfectly
So sorry you are feeling a bit lost with symptoms and not knowing what is wrong - so scary and bewildering. I suggest taking this one step at a time.
Try to get a referral/appointment with a rheumatologist (usually referral by GP or if appropriate you could go private). There are many people (me included) who are sero negative but with an RA diagnosis .
Trust in your rheumy who will look at your symptoms overall before making a diagnosis. This site is always available for questions, so many people here with so much knowledge and ready to try and help.
Main thing is try not to be scared….be your own advocate….. trust in the medical advice you receive.
Thanks you so much for your kind words of advice and encouragement. I have seen a rheumatologist and once my MRI is carried out hopefully I can have a follow up appointment and get their expert opinion on my circumstances. This site has been no end of comfort though I must say.
My blood is always normal and other than some inflamed tendons once on a hand ultrasound, everything is always normal except for osteoarthritis here and there. I had an MRI on my lower back and it was normal also. But I have the stiffness in my thighs, and hips and hands and wrists and have been diagnosed with psoriatic type arthritis. My joints never look swollen to my eyes but my rheumatologist says they are. They don't even really hurt other than the tendon type pain. The stiffness is the worst of it and it gets way worst when I exercise. I think it would be beneficial for you to ask to see a rheumatologist. Hopefully you will get some answers from your MRI. My X-rays have never shown signs of inflammatory arthritis. I think they try to catch it before it does damage to your joints. Best.
I think we have similar conditions/negativr results from blood tests and scans etc. After going for a run my symptoms are pretty bad but historically was always stiff after exercise. I have started a pilates class and appreciate i need to do exercise that is less strenuous on my body such as cycling and swimming. Do you take any medication for psoriatic arthritis? Also have you changed your diet at all?
I take leflunimide and have just started cosentyx……3 days ago. I have not noticed any difference in the stiffness when exercising from the leflunimide. It did stop my muscles/ liagaments from hurting as much. For example taking the milk jug from the fridge was painful. My rhuemotologist feels my joints and says how many are inflamed. I can’t see anything nor do they feel sore to bend. She says the inflammation is hard on the heart and other organs as they, too, get inflamed. I haven’t changed my diet other than limiting alcohol because of the medication. I asked my doctor about all the talk on the internet on eliminating night shades and she said that if they do not bother me keep eating them. She said just eat a balanced died. Don’t eliminate anything unless it is bothering my stomach. Nothing bothers me. Some people on here go gluten free and see a difference. When I exercise my thighs, especially on the right side, become so stiff that it is hard to get them to move freely and my hands feel super tight and stiff. Is this the stiffness you experience? Most people on here say their stiffness disappears with exercise. I am hoping the Cosentyx will help with the stiffness so I can get back to enjoying linedancing. Honestly, sometimes I don’t even know if I have the correct diagnosis.
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