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Thread: Update on Ingemlb

  1. #21
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    Well that was a bit of a fiasco. The process of elimination was the CTscan. It showed no stones in kidneys and apparently also no infection. Over phone consults with my Rheumy they also decided no wegener's involvement. So sent me home with pain meds. Should I really want to see my Rheumy before end of month I was told only option would be the privaye ER which could then admit me as a private patient and call on him to visit.
    So right now I don't know what to think. I have an appointment with my GP (PCG) tomorrow maybe he has some ideas.
    "Slow and Steady wins the Race"
    All the best, Inge

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    I hope you have a comfortable night Inge and that the pain eases off (and goes away) by the morning.

    Take care
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Hi Inge,
    I am reading all this after all is done.... I hope that you will feel better tomorow. my doc allways say to check if things are getting better or worse. lets hope things will get better. it will be a good sign. please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
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  4. #24
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    Thanks Alysia and Michele. I was thinking as my Rheumy during a phone conversation with a doctor who when I first arrived had no clue what Wegener's was (but then did some research) was convinced this is nothing to do with Wegener's I may as well tell my GP it's not Wegener's related and ask him if he knows of a good Nephrologist who could investigate this further and find out what is causing it. That way I get my kidneys' checked out and if anything is found can report back to the Rheumy. Also as I am seeing an Orthopaedic surgeon on Wednesday for the knee pain I could ask him to check if there is something wrong with the back as the doctor at the hospital thought that could also be an issue at first.
    And if the pain is gone by Wednesday I can forget about for now.

    There are some notes that Bactrim can cause flank pain so I am looking down that track too.
    "Slow and Steady wins the Race"
    All the best, Inge

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    Just saw my GP and he had all the test results from the hospital and convinced me this is nothing to do with the kidney but most likely muscular/skeletal and hence my appointment with the orthopaedic surgeon on Wednesday may get to the bottom of this one too unless it is in the spine. Anyway I feel relieved. The GP reckons apart from kidney stones most kidney disease doesn't actually cause such pain so he is very sure after seeing the cat scan results that I don't need to worry about the kidneys. More likely the knee and flank pain are related, both on the right side, could be referred pain. So will see. If it is a pinched nerve it may just go away.

    Thanks everyone for your support. Pain is still there but I am less worried
    "Slow and Steady wins the Race"
    All the best, Inge

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    I was dx'ed with costocondritis or ribr cage syndrome for my left sided flank pain. I thought that it was my kidneys and also had all the test.
    Was your sed rate elevated? I don't know if that will ease your mind, but it sure is painful. There is also a forum for that also. Best wishes to you about finding out where your pain is coming from.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Not sure Jana. It's more at the lower end of the ribcage to the side and near the waist. The pain comes and goes. I thought it was triggered by passing urine however I now think it's triggered by changing into certain positions (hence sitting on the toilet changing positions etc). For instance when I am reclining it hurts like hell to sit up and vice versa. Twisting to the right also brings it on. When the pain starts it is extremely severe and takes the breath away. Inbetween these attacks it is just a discomfort. It hasn't been quite as severe as on Wednesday evening when it started but then I have been on pain meds since then which may be taking the edge of it a bit. I am taking extra strong paracetemol (we call them Panadol Osteo) for my knee but I think I may need to add some tramadol.

    Unfortunately if it is inflammation I don't know what to take as due to stomach ulcers I can't take any of the anti-inflammatories. I am almost tempted to take some just to see if that relieves the pain. I'll think about it. The mind boggles to think it could be referred pain connected with the knee pain - that also being referred. Makes it all so much harder to track down! I wish now in the hospital when they did the cat scan they had thought of scanning the spine at the same time. Would have saved me having another scan. I had so many of them whilst in hospital earlier in the year.

    Not sure about the "Sed rate". It wasn't mentioned. They did say the blood tests showed signs of inflammation and the urine showed traces of protein and blood but nobody seems to think that's anything worth worrying about. When I pointed out to my GP that someone on the Wegener's forum mentioned these tests he dismissed it and said "Don't worry about that stuff" (after telling me they had all been done). Not sure what I am to make of it. But looks like doctors in general aren't all that keen on patients getting advice from forums. I normally keep my mouth shut lol If it ends up being the kidneys I will come down on them all like a ton of bricks. I told him that as I was being told everything was in such good shape I want to keep it that way hence I am keeping an eye on the organs. He agreed that was a good idea. At least I got that much from him
    "Slow and Steady wins the Race"
    All the best, Inge

  8. #28
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    Quote Originally Posted by ingemlb View Post
    Not sure Jana. It's more at the lower end of the ribcage to the side and near the waist. The pain comes and goes. I thought it was triggered by passing urine however I now think it's triggered by changing into certain positions (hence sitting on the toilet changing positions etc). For instance when I am reclining it hurts like hell to sit up and vice versa. Twisting to the right also brings it on. When the pain starts it is extremely severe and takes the breath away. Inbetween these attacks it is just a discomfort. It hasn't been quite as severe as on Wednesday evening when it started but then I have been on pain meds since then which may be taking the edge of it a bit. I am taking extra strong paracetemol (we call them Panadol Osteo) for my knee but I think I may need to add some tramadol.
    Inge if it's muscular in nature it is probably being caused by one or both of the following:

    1. A trigger point in the Illiopsoas muscle (two muscles) located deep in your belly. They attach to your 1-5th lumbar vertebrae, the illiac crest (hip bone), and the femur (large leg bone.) The primary purpose of these muscles is to flex your hip by lifting your thigh toward your belly. It also helps you to sit up from a prone position. It can refer pain from your lower back to your gluts (flank).

    2. A trigger point in the Quadratus Lumborum (QL). It attaches to the last rib, 1-4th lumbar vertebrae, and the iliac crest (hip bone). It is also a deep abdominal muscle. The QL's supports the entire upper body without them you'd sway like a flower stem. It also participates in forced exhalation like coughing and sneezing. Pain pattern is lower back and flank.

    The pain with both of these muscles can be sharp and stabbing depending on where in the muscle the trigger point is located. They can be massaged out by a therapist that knows trigger point therapy. I won't lie to you it will hurt like the dickens to get them out, but when the muscle releases you will feel such relief you will realize it was worth it. There are also some self help massages you can do and if you're interested I'll post them.

    I've both had these trigger points and worked on many a client with them. Some would walk in doubled over in pain, but I was able to help the majority of them in one or two sessions that concentrated on those areas. This is no time for a full body massage as the therapist needs all the time to deactivate the points.

    These can both be researched online too. Hope this helps if the ortho decides it's muscular.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  9. #29
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    Hi Inge,( I just read your post from 3-26-14 and wrote this, then read your updates.) Your story was very informative to me, thank you so much for sharing! You are really doing everything you can to take control of this disease and do all the right things! Ive used a sinus machine. It did work well to get those crusties out! Mine did anyway. And getting off your pain meds is good, then you know whats going on, and things are not masked my the meds. I wish I was as diligent as you are when I was first diagnosed. I was newly married and just wanted to get back to my "normal self"! I did what the dr said, but I didn't let pain stop me, if joints hurt, I just asked the Dr, if I used them anyway would it damage them? He said "no", so my joint pain was ignored and I exercised, jet ski'd, hiked, played, etc. I didn't want anyone to know I was sick. Anyway, I hope you can dump the pred. Methotrexate never helped me, so I have had to stay on Pred. for all these years, but LOW dose, 5mg. If I flare, it goes up a bit, I have a Rituxan infusion, and then it goes back down to 5mg. If I go off, I go into a flare. But Ive been on BactrimDS for 20 years. I wonder why doctors (especially in Australia, as I have seen on this site, but also in other places other than the U.S.) have question about the Bactrim DS. Is it a reaction some people have? Is it bad to be on it for years? My doctors made it seem like it does not do any harm, they tested it on Wegeners Pts. and found it helps keeps your lungs from getting bacterial infections, so after discussing it w/specialists, its something they started right when I was diagnosed, and I have been on it ever since. Some people on the site have had allergic or other reactions to the med itself. But I have not yet been allergic to any med. I am lucky, some drs say either a person tends to have some allergic reactions to many things, or none at all. You eat really well. And exercise, I started eating just like you 2 months ago, no sugar, no breads, and I went from 160.lbs to 140lbs. Im pushing for 10 more lbs down, but not eathing all that cheap fast food has totally made ALL my joint pains from age, hip aches, knee pain, etc. ALL are GONE on this way of eating! So Im sticking to it. Its healthy! I am so glad to have met you on here and although I am not able to look at the site every day,(I work part time even though on disability. I can work a certain amt of hrs and stay on disability. I have to work to make ends meet, my husb left me after 20 yrs and I gotta make it somehow! But I love my job. After 20 yrs of marriage, living alone is lonely! But yall make it better! I just get really tired and fall asleep right after work! LOL) I never go a week without getting on here. The people on here are so great! So supportive! I learn so much. I have changed a lot since I have joined. Just taking better care of myself and realizing Im not alone. Im looking forward to following your progress. If you find out the reluctance of the Bactrm DS by the doctors, I would love to know. Even thought Im doing good on it, Ive just heard it too many times and am interested. So if you find out, let me know! :-) Take care!
    Last edited by Lilly; 04-06-2014 at 02:24 AM.
    Life is a Gift~ Lilly

  10. #30
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    Quote Originally Posted by windchime View Post
    Inge if it's muscular in nature it is probably being caused by one or both of the following:

    1. A trigger point in the Illiopsoas muscle (two muscles) located deep in your belly. They attach to your 1-5th lumbar vertebrae, the illiac crest (hip bone), and the femur (large leg bone.) The primary purpose of these muscles is to flex your hip by lifting your thigh toward your belly. It also helps you to sit up from a prone position. It can refer pain from your lower back to your gluts (flank).

    2. A trigger point in the Quadratus Lumborum (QL). It attaches to the last rib, 1-4th lumbar vertebrae, and the iliac crest (hip bone). It is also a deep abdominal muscle. The QL's supports the entire upper body without them you'd sway like a flower stem. It also participates in forced exhalation like coughing and sneezing. Pain pattern is lower back and flank.
    .
    Thank you cindy will study this up and and figure out how to get onto a trigger point therapist here in Melbourne. Never been with one before. Will see what the orthopaedic surgeon comes up with. I am hoping tests will reveal the issues. My GP thinks if it is the spine I will need a referral to a spinal specialist but hopefully that will come out of any tests ordered on Wednesday. I feel confident with this surgeon as 2 years ago when he discovered a torn meniscus he was not keen to operate and hydrotherapy managed to fix the pain. The warmth of the pool and taking away the pressure of weight on the joints seems to be very effective so am probably going to try that again.
    "Slow and Steady wins the Race"
    All the best, Inge

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