Good morning
Just wondering if anyone has tried an SI belt?If so, how useful did you find it please? My sacroiliac joint is really giving me hell right now (part of my condition). I'm doing lots of exercises to try alleviate the pain. It helps a bit. Rolling tennis ball between wall and back gives quite a bit of relief, but walking still painful. I'm wondering if a belt would be useful.seems to have very good reviews?
I have ankylosing spondylitis, and my sacroiliac used to be one of my worst areas. I did try a SI belt, but found it aggravated my pains unfortunately. My SI joints are now fused and get more of an ache or muscle spasms from the shortened tendons. It also seemed to make me stiffer, you may have better luck with it though 🤞
That's a pity it didn't work for you. Thank you for reply. Much appreciated. I've just ordered one. I guess I'll see what happens. Yes, this darned joint is my worst issue too.
I am so sorry you are suffering so! If it is SI inflammation I am experiencing it is certainly no picnic. I feel as though a giant has got my butt in a firm grip and is somewhat reluctant to let go. Am I right in thinking that you have problems with your ribs too? I have had three bouts of costochondritis after the flu jab and this time it has not resolved (10 months). The joints all around the rib cage are very tender if pressed gently and at times give me jib if I do something like throw a ball. Lastly, do you get plantar fascilitis as well? Urg! Depressive list of questions, I do apologise. x
Yes I do suffer with my ribs. They have been fused for years. I have a chest expansion of 0.8cm, that has resulted in issues with my lungs. The diaphragm is weak due to it not expanding, this has caused a hiatus hernia, which has resulted in lung damage from aspirating acid. I also havd lots of pockets of collapsed lung - Atelectasis, which my respiratory specialist says is also due to lungs not better no abkd to expand fully. The whole of my rib cage is tender to touch, especially the sections under the arms and where the spine and ribs meet. I get massages every 2 weeks to try and ease the muscle tension, caused by the calcified tendons. I also have tingling in my hands, which neurophysio ruled out carpal tunnel and say it’s coming from my neck. Unfortunately musculoskeletal disagree dispite negative nerve test and negative for the physical tests, they insist it’s CT. I have a slipped disc at C6-7 for 10yrs and it has now calcified in the slipped position, and is pressing on the thecal sac of the spinal cord. So I tend to agree with the neurophysio. Just had an upto date mri and waiting on musculoskeletal physio reviewing it 🙇♀️.
I do also get plantar fasciitis, which is very common in AS. Currently have it in my right foot, as well as toes feeling like I’m walking on broken toes. I can see the 2nd & 3rd toes are subluxing. This has already happened in the left foot 3yr ago. It’s a disease that keeps on giving. The inflammation has also caused enlargement of the heart. They think it’s because I went so many year’s undiagnosed with uncontrolled inflammation doing it’s worst. I suffered from mid 20s but was only diagnosed at 51 when X-ray found the fused SI joints and rib fusion.
My goodness, what can I say? So much to go through as a result of delayed diagnosis. Tragically, my grandmother was the same- although she was labelled a hypochondriac and never received any treatment. She died of pulmonary fibrosis, which my Aunt now has. My diagnosis is UCTD and I am hoping that since this started at 60, that the inflammation in my ribs/ and SI joints are linked to the CTD. The plantar I have had for 3 years, a steroid injection helped but was undone when I flared again after the flu jab. The pain under the arm that you describe, does it radiate towards the upper part of your breast. Mine does and was beginning to think I must be becoming neurotic- isn't it dreadful that we do this to ourselves - the self doubt. I suppose it is all part and parcel of adapting to having a chronic disease.
I am once more so very sorry that you are going through all that you are. Very best wishes and thank you for taking the time to respond. Rosie x
I initially was told it was pulmonary fibrosis, and told life expectancy was 2-5yrs. Had taken a while to accept it, and started my bucket list, I was 55. Then 7 months later I was told they sent my scans to the Brompton who said although it looked like pulmonary fibrosis, it was damage due to acid. So was very relieved, although would have preferred not to wait 7 months to find if been misdiagnosed. My specialist does say there is still a risk it can turn into pulmonary fibrosis l, so she’s keeping an eye on things. My tenderness is generally everywhere boobs included, it’s just under arms and spinal area are worst. So yes boobs are constantly tender, find bras extremely uncomfortable, but bra less isn’t an option with a G cup. Would love a breast reduction to take the weight off my spine, but I have severe adrenal insufficiency from years of steroids, that the risk of crisis is too great, so private hospitals won’t do it. Unfortunately in the nhs it’s years waiting and you need a bmi of <25, I struggle to lose weight due to the steroids, so that’s unlikely to be an option. Hope you find relief soon 🤗
So very pleased that you aren't facing pulmonary fibrosis. My Aunt (as I said has it, and has done for many years. She also was told about the short life expectancy..)Bras - have given up. I am a D to E cup and now wear Sweaty Betty yoga bras - only thing I can tolerate, even then some days I seem to swell and can't bear anything. Steroids are tricky little things aren't they. x
Just been looking at Lululemon, they do soft yoga type bras in a G cup - just a thought.x
Interesting sub-thread on breast tenderness. For what it’s worth, I was experiencing intense tenderness with swelling while taking folic acid on non-MTX days. My rheumatologist and gynecologist were not aware of a connection between the two (but also pointed out that historically men’s bodies have been the standard for research and less is known about women and other genders). After I was switched from folic acid to leukovorin/folinic acid, my breast tenderness diminished dramatically. The slight swelling eased as well. I believe that I was reacting somehow to the relatively high dose of folic acid that MTX patients need to take to mitigate side effects as the intense tenderness started shortly after I began the MTX with folic acid. Take care!
Well the SI belt arrived in the post this morning. I got a recommended good quality one. It makes a huge difference to pain, and stability. It does rather make me look like a heavy weight boxer with one of those belts! Not bothered...it useful.
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