Pmr and body swelling or blobbiness
Posted , 9 users are following.
I got pmr in August 2016, started on pred that September. Prior to the onset of my incredible pain, I had some soreness and stiffness in my groins upon movement, but I also had a ton of swelling or bloating in my abdominal area all the way from my lower pelvic area to my breasts), upper thighs and upper arms. My breasts are also bloated. (I'm 5'3" and weigh 112 on a good day.). Saw my doctor, saw urgent care, had sonogram and ultrasound and blood work...all negative, except esr at that time was 31, eventually went up to 58 at time of pmr diagnosis a month later and beginning of pred journey. Everyone back then said I was just prone to swelling--I'm not. They said I had tendonitis (I didn't). The blobbiness settled down after I started on the pred.
the "blobbiness" looks to me like water swelling...my pants and bra feel too tight (I actually have cleavage and buttocks which I usually don't have). The muscles are kinda blobby. Now I have it again this morning. I had it 2 weeks ago. It feels watery...like bloating. The docs back in 2016 (before onset of pmr) said it was abdominal bloating...but it's more than just my abdomen. I don't have swelling in my lower legs or fingers or hands.
Yesterday i I felt pretty good (I'm never pain free); I walked 4500 steps (somewhat of a miracle to me) and did light housework. Busy all day. I'm at 6.5 mg of pred, after a bump up to 7 for 5 days to help me with our 2 day drive home from Florida last week. Been doing the dsns method, and bumping up whenever I have a glitch.
here is my question: has anybody else ever heard of this? What the heck is it? One nurse practitioner that I saw back in 2016 thought it could be rhabdomyolsis but said it if were, I would have been in ICU.
Had a lot of salt yesterday...could that be it?
Hoping someone can help. Thank you so much!
1 like, 15 replies
lilian05079 Twopies
Posted
Salt can retain a lot of fluid in your body..perhaps you need a diuretic because you may have edema which is water retention...chat with your health provider about it..my very best wishes to you Twopies
Twopies lilian05079
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Is edema related to the pmr, you think? Because I never had it before...and no medical professional has ever mentioned it as a possibility. It could be edema, simply because I ate a lot of potato chips yesterday which I usually don't do. But in the beginning of pmr (pre-diagnosis) when the blobbiness was so bad and so scary, I don't recall eating more salt than usual. Thanks.
lilian05079 Twopies
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Preds cause the body to retain water as they affect the electrolytes sodium and potassium....and causes high blod pressure. You need to get it checked and get a diuretic..see doc ...my best wishes to you Twopies....
Twopies lilian05079
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judy93591 Twopies
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Oh, dear goodness, if I could only add my whole list of side effects, ....but as to the swelling you are having, I have not answer, but...I had this so bad, that water seeped out of my lower legs so bad, I wore heavy toweling bands, that my hubby made for me. They would be sopped in about 10 minutes. I had every test available, for a cause, but none was found. Diuretics didn't help AT ALL. I had swelling all over. I have had about every side effect of pred that there is. I was diognosed in May, 2015. What a journey that none of us wanted. But...regardless of the side effects, I would rather live a shorter life, than live in such pain. I had to educate my Rheumy, and we work well together...I am down to 5mg. and also take Methrotrexate, which has been a benifit to me. I know from the posts, some have issues with it, but I didn't . I wish we all had an answer to this immune disorder. It put a halting brake on my normal, active, thin life...but...I am still above ground, and thankful for what I can do now, that I couldn't for many, many months. Slow, but sure, things get better than they were. Happy Thanksgiving to all reading our forum. I don't know if I could have made it without the sharing, and wonderful advice our Eileen H gives us..may we all see better days...ps...I am 76, was just 73 when diognosed...
Twopies judy93591
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judy93591 Twopies
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EileenH Twopies
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I find salt is awful! My feet will be up like footballs even after one meal out! But lots of water for a day or two sorts it. A meal that has salt AND carbs makes me feel really bloated for a few days. But I don't recognise what you are describing. What I did have early in PMR was RS3PE syndrome - but I have never come across that causing bloating. in the trunk.
A general sort of google brought up an article called Edema in the upper body as a pdf. It sounds a bit like what you are talking about - and the author suggests all sorts of measures to help including manual lymph drainage. I had bad swelling of my ankles a few years ago and a local physiotherapist I had gone to see about something else suggested we try it. He just did one treatment aimed at the worse leg - and within 2 days both legs were back to normal and rarely have swelled up since then But I felt "lighter" all over afterwards. Maybe worth a try?
Twopies EileenH
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It might be sluggish lymph glands which can get overwhelmed with inflammation...hmmm.
EileenH Twopies
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Twopies EileenH
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Story of my life. And come to think of it, for all of us really. Tomorrow will be better, it usually is. 😋
lilian05079 Twopies
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You need to have your sodium, potassium and protein levels checked via blood tests as your kidneys may be involved causing oedema. Have you had these checked recently??......
Twopies lilian05079
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lilian05079 Twopies
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Oh good they are keeping a check on it. It is odd that they cannot find out what the swelling is..You are an interesting case Twopies..keep us posted and keep smiling and positive as Michdonn always says.....my very best wishes to you Twopies for a speedy diagnosis....
joey_12298 Twopies
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