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Old 11-26-2013, 01:47 PM   #1966
pitterpint23
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Quote:
Originally Posted by mommasita
HI!

Getting our hair done feels so nice, it must make you feel good about yourself!

I am tired also, I caught the dreaded cold that my daughter and husband had. So I look like Rudolph, can't sleep.. UGH..

I went for my bloodtest Monday, and that is when it hit.. I had to cancel the Rheumy, I felt so badly. I went for the CT, and they realized I couldn't stop coughing or sneezing, so they changed that, and then today I get a call to confirm my MRI and later in the day to say it has to be rescheduled lol.. They said I need a special technician as now it will be an Arthogram? An injection into my shoulder and then the MRI, so that is now next week.. Probably best, as it is about 90 minutes, and no way could I stay still..

MY SON GOT ACCEPTED TO COLLEGE .. HE starts in January.. SO SO SO proud of him... He struggles, he took two night courses and excelled, so that helped.. In the past year, he has graduated High School, passed his drivers license, and got a part time job at Mcds'.. Very pleased..

Gentle hugs all around
I haaaaaate MRI's. With my chiari, I've had 14. Totalling 7.75 hours in the tube. They make me so nauseated.
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Old 11-27-2013, 10:10 AM   #1967
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Daughter has been miserable for weeks and weeks. we try to do little things to cheer her up, sometimes it works. she is hating her therapy sessions and feels worse after therapy for several hours. we've been told that it will get better. she had a pain management massage on Monday, she loved it!!! wish she could get one daily!

she goes in for testing next week...vitamin levels, absorption issues, possible x-rays or other scans. I am interested in seeing how 'off' her vitamin levels are.

She has been very touchy, upset, crying a lot. Especially on therapy days. Trying to cheer her up a bit- we'll go to frozen today. my girls have been excited about that for weeks!!!

starting swimming and movement class after Thanksgiving, she hopefully will like that a lot. I get to do it with her, so she was happy.

nights have been hard, she sleeps best in the mornings- after 5 am. dr. gave her a combo. of anti-depressant and it makes her sleepy. Started on the smallest dose- but she'll need to gradually work up to the right dosage over a few months.

the anti-depressant is currently the only thing she's on daily. She's been taking a pain killer on occasion, but she tries her hardest to go with out them.
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Old 11-28-2013, 12:02 AM   #1968
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Originally Posted by pitterpint23 View Post
Omg a fibro thread!! So glad I found you all! I'm Jess, 24 yo with a two year old. Diagnosed at 21 after a serious injury that lead to rsd after a broken bone.
Welcome

You will find the members here are WONDERFUL!

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Originally Posted by pannm View Post
Daughter has been miserable for weeks and weeks. we try to do little things to cheer her up, sometimes it works. she is hating her therapy sessions and feels worse after therapy for several hours. we've been told that it will get better. she had a pain management massage on Monday, she loved it!!! wish she could get one daily!

she goes in for testing next week...vitamin levels, absorption issues, possible x-rays or other scans. I am interested in seeing how 'off' her vitamin levels are.

She has been very touchy, upset, crying a lot. Especially on therapy days. Trying to cheer her up a bit- we'll go to frozen today. my girls have been excited about that for weeks!!!

starting swimming and movement class after Thanksgiving, she hopefully will like that a lot. I get to do it with her, so she was happy.

nights have been hard, she sleeps best in the mornings- after 5 am. dr. gave her a combo. of anti-depressant and it makes her sleepy. Started on the smallest dose- but she'll need to gradually work up to the right dosage over a few months.

the anti-depressant is currently the only thing she's on daily. She's been taking a pain killer on occasion, but she tries her hardest to go with out them.
So sorry this transition time is so difficult for your DD. It is not unusual for things to get worse before they get better better in therapy. I used to tell my families expect this to be unstable for 6 weeks or so. They say it takes 6 weeks to begin to change a habit or mindset. So these weeks that she is pushing against that wall could be tough. It may be something a simple as trying to deal with the fact that there is no quick fix for this is really getting her down and in tx they may be working on the acceptance of what ever is going on. On the other hand it may be that her therapist is not a good fit for her. Just like any relationship sometimes a client and therapist can be oil and water. Listen closely to your DD and make sure you understand as best you can why she is feeling so bad after tx. Giving her some kind of reward after like going for ice cream may help too. Treatment can be intense and therapist don't have as many options as we did before. I was able to take my kids out and this made sessions much less stressful as kids are not little adults they don't tend to feel comfortable in the office setting. Unfortunately with Hippa regulations and other reimbursement issues have really limited therapist flexibility. Upside is there is greater accountability but downside is kids that are sensitive to a medical setup may feel more stressed than when we could go out for a session instead. Does she get upset after regular Dr appointments? If so she may be transferring that feeling to tx if the building/rooms remind her of the Drs. Most likely it is just normal transition so I wouldn't worry.



Happy Thanksgiving to all my Fibro friends...

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Old 11-28-2013, 09:30 PM   #1969
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Hi everyone

mommasita: Congratulations for your DS and his college acceptance. Very exciting!! I know when we see our kids happy it does a world of good for us, too.

tiggspring: I can relate to how you felt almost too tired to go to your hair appt. In the last few years I have cancelled more appointments (doctors, hair, nails, medical testing, etc) than I ever have in my life. I try to make myself go. In fact, I've been cancelling my mammogram appts for the last couple of years and I really need to reschedule and get that done.

pannm: It breaks my heart to read about your DD. I hope that the swmming will help her to feel a little better, emotionally as well as physically. I'm glad that her massage made her feel a little better. I've heard from several people that massage is excellent for people with fibro.

pitterpint: Welcome!! This is a great thread and a place where we can vent, complain, ask questions, etc, and everyone here totally understands and are compassionate. I'm sorry you're dealing with this at such a young age.

1girln3boys: Welcome I have fibromyalgia and also RA, so I understand about neither ALL sitting or ALL moving/walking being the right thing. For the last several years I've rented an electric scooter to use while at WDW because otherwise I wouldn't last a day or two, fatigue-wise. When I need to get up and stretch my muscles and move my joints my awesome husband has to get into the scooter and drive it a bit. I'm sure that to onlookers it appears that neither of us NEED the scooter and just use it to get through lines quicker.

rosanab: Club 33 - how exciting!!!! Let us know how it was.


me: Working for a few weeks with mandatory extra hours was rough. It doesn't take much to throw me out of balance, so to speak. I had some vacation days this past week so I'm feeling pretty good right now. I do have work tomorrow, though. DH has been off all week so I've been sleeping in a little later than usual too, since I usually get up when he gets up.

Today was a nice, low-key day here. DH made his usual turkey, and I made the side dishes. The best part was that it was ONLY my family of 4. No guests, no going out. My family all live in NJ, and DH's only brother died this past year, and his only sister lives in VA, so that left his father and his step-mother who live nearby, and DH decided to not invite them over. We really needed to spend this day with just US. We slept in and DH put the turkey into the oven before we had breakfast. If we were having company we would've had to stick to a schedule. It was nice to finally not have to do that.

Anyway, I have a little mom-brag about my younger DS. He graduated college this past May, and a month later he was hired as a paid intern in Boston. He loved the job and was hoping that they would ask him to stay on permanently. But as the time for his internship came closer to end, the less he felt that they were going to. A couple of weeks ago he came home with a folder and a written job offer/contract from them. Talk about exciting!!! For years we had been telling him that he will probably not be able to find a job in his field right away and that it could take years. And now here he was just a few months out of college and he has a job he loves, a great company, great benefits, great salary, and just a short walk from the train stop in Boston.

We are so proud of him. He has mild Asperger's, and he's continually pushed himself out of his comfort zone. A few years ago he wouldn't have even considered taking a job in Boston (we live in a quiet suburb), and now here he is a commuter, and saying he eventually wants to get an apartment in the city.

As for my older DS, he's doing ok. He's the one that I worry about. He's had a rough time of it, and it's a long, slow climb to get to where he wants to be at his age (25). He's an awesome person, he's intelligent, has an excellent sense of humor. I just wish there was a place he could go/work that would accept his disabilities so he could flourish. I know eventually he will do very well. I have to keep reminding myself of that.

Ok, I think I've rambled on long enough. Hugs and pixie dust and Mickey Mouse to everyone.
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Old 11-29-2013, 12:06 AM   #1970
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HI jess, SO HAPPY to see ya here. Please accept my apologies for not emailing .. Just trying to get better and then the stupid snow/ice storm.

Seaspray: THAT IS GREAT FOR YOUR SON Our sons sound a lot a like..
Sounds like a nice meal!

HI Tigg! Happy Thanksgiving to all my American friends!!!!!!!!

Well, I had the MRI with Arthro today~! I have had so many MRI's and CT's I should lite up like a glow worm .. Thankfully they generally don't bother me, it is noted I can not maintain the position with Chiari, so we must take breaks..

HOWEVER, I was petrified of this after stupid me googled it.. I took my son as they said no driving for 12 hours.. I was still frozen after and thought pffft this is nothing. I drove home, because he is a NEW driver, and we have LOOOOTS of black ice on the roads.. Fast forward to now, and it feels like a million aliens are in my shoulder trying to break through.. The needle to freeze was ok, until the Dr apologized and said now I have to go to the bone. It did freeze quickly, and I am supposed to be 1-3 days of taking it easy...

I hope you are all doing as well as we can.. Lots of love
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Old 11-30-2013, 10:01 AM   #1971
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Quote:
Originally Posted by SeaSpray View Post
Hi everyone mommasita: Congratulations for your DS and his college acceptance. Very exciting!! I know when we see our kids happy it does a world of good for us, too. tiggspring: I can relate to how you felt almost too tired to go to your hair appt. In the last few years I have cancelled more appointments (doctors, hair, nails, medical testing, etc) than I ever have in my life. I try to make myself go. In fact, I've been cancelling my mammogram appts for the last couple of years and I really need to reschedule and get that done. pannm: It breaks my heart to read about your DD. I hope that the swmming will help her to feel a little better, emotionally as well as physically. I'm glad that her massage made her feel a little better. I've heard from several people that massage is excellent for people with fibro. pitterpint: Welcome!! This is a great thread and a place where we can vent, complain, ask questions, etc, and everyone here totally understands and are compassionate. I'm sorry you're dealing with this at such a young age. 1girln3boys: Welcome I have fibromyalgia and also RA, so I understand about neither ALL sitting or ALL moving/walking being the right thing. For the last several years I've rented an electric scooter to use while at WDW because otherwise I wouldn't last a day or two, fatigue-wise. When I need to get up and stretch my muscles and move my joints my awesome husband has to get into the scooter and drive it a bit. I'm sure that to onlookers it appears that neither of us NEED the scooter and just use it to get through lines quicker. rosanab: Club 33 - how exciting!!!! Let us know how it was. me: Working for a few weeks with mandatory extra hours was rough. It doesn't take much to throw me out of balance, so to speak. I had some vacation days this past week so I'm feeling pretty good right now. I do have work tomorrow, though. DH has been off all week so I've been sleeping in a little later than usual too, since I usually get up when he gets up. Today was a nice, low-key day here. DH made his usual turkey, and I made the side dishes. The best part was that it was ONLY my family of 4. No guests, no going out. My family all live in NJ, and DH's only brother died this past year, and his only sister lives in VA, so that left his father and his step-mother who live nearby, and DH decided to not invite them over. We really needed to spend this day with just US. We slept in and DH put the turkey into the oven before we had breakfast. If we were having company we would've had to stick to a schedule. It was nice to finally not have to do that. Anyway, I have a little mom-brag about my younger DS. He graduated college this past May, and a month later he was hired as a paid intern in Boston. He loved the job and was hoping that they would ask him to stay on permanently. But as the time for his internship came closer to end, the less he felt that they were going to. A couple of weeks ago he came home with a folder and a written job offer/contract from them. Talk about exciting!!! For years we had been telling him that he will probably not be able to find a job in his field right away and that it could take years. And now here he was just a few months out of college and he has a job he loves, a great company, great benefits, great salary, and just a short walk from the train stop in Boston. We are so proud of him. He has mild Asperger's, and he's continually pushed himself out of his comfort zone. A few years ago he wouldn't have even considered taking a job in Boston (we live in a quiet suburb), and now here he is a commuter, and saying he eventually wants to get an apartment in the city. As for my older DS, he's doing ok. He's the one that I worry about. He's had a rough time of it, and it's a long, slow climb to get to where he wants to be at his age (25). He's an awesome person, he's intelligent, has an excellent sense of humor. I just wish there was a place he could go/work that would accept his disabilities so he could flourish. I know eventually he will do very well. I have to keep reminding myself of that. Ok, I think I've rambled on long enough. Hugs and pixie dust and Mickey Mouse to everyone.
Seaspray so glad to see you! Congrats to your son! Boston is a tough town to get a job. Lots of demands on workers and lots of competition. I think your wish may already be coming true. For your DS to get the job from an internship means they know him quite well and fully accept his challengers or they wouldn't hire him. I am sure he feels pressure and inadequate at times but I would argue that anyone his age in the intense environment up there would feel that way. How wonderful for your son. I love Boston. I just never could afford to live there and once we decided to have a family we felt the stress and cost of living was not conducive to us having a good family life. It is fantastic for a young man making his way in this world!
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Old 11-30-2013, 10:02 AM   #1972
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Originally Posted by mommasita View Post
HI jess, SO HAPPY to see ya here. Please accept my apologies for not emailing .. Just trying to get better and then the stupid snow/ice storm. Seaspray: THAT IS GREAT FOR YOUR SON Our sons sound a lot a like.. Sounds like a nice meal! HI Tigg! Happy Thanksgiving to all my American friends!!!!!!!! Well, I had the MRI with Arthro today~! I have had so many MRI's and CT's I should lite up like a glow worm .. Thankfully they generally don't bother me, it is noted I can not maintain the position with Chiari, so we must take breaks.. HOWEVER, I was petrified of this after stupid me googled it.. I took my son as they said no driving for 12 hours.. I was still frozen after and thought pffft this is nothing. I drove home, because he is a NEW driver, and we have LOOOOTS of black ice on the roads.. Fast forward to now, and it feels like a million aliens are in my shoulder trying to break through.. The needle to freeze was ok, until the Dr apologized and said now I have to go to the bone. It did freeze quickly, and I am supposed to be 1-3 days of taking it easy... I hope you are all doing as well as we can.. Lots of love

Wow that MRI sounds painful. ..Hope you get good news.
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Old 11-30-2013, 10:05 AM   #1973
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I've got news..

I'm being tested for invasive chiari malformation. Surgery is a must.

Hoping to be able to get around for my sons second birthday
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Old 11-30-2013, 11:35 AM   #1974
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I've got news.. I'm being tested for invasive chiari malformation. Surgery is a must. Hoping to be able to get around for my sons second birthday





So sorry you need surgery especially with a toddler. My Dh had shoulder surgery when my DD14 was almost a year old and already walking taking and climbing. It was tough managing parenthood and the surgery. What exactly is Chiari malformation? If you mentioned it before, my memory has been a bit off .
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Old 11-30-2013, 11:49 AM   #1975
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So sorry you need surgery especially with a toddler. My Dh had shoulder surgery when my DD14 was almost a year old and already walking taking and climbing. It was tough managing parenthood and the surgery. What exactly is Chiari malformation? If you mentioned it before, my memory has been a bit off .
No worries. Its a brain disease which causes the cerebellum to be pushed on and causes fine motor function and other limb use loss. Headaches. And I have vision loss.
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Old 12-02-2013, 08:46 PM   #1976
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Had a bit of an issue over the last few days with our daughter. I'm wondering if anyone has/has known someone with fribro. who has had rib cage problems. My Daughter has a left rib cage pain that is really horrible. Her rib cage is occasionally 'misplaced/floating/elevated' to the point that the difference is quite visible. The bottom of her left rib looks like it's bending outwards at times.

We've spoken to two different Dr.s about it. We were told that it's 'something we need to keep an eye on.' but never given any sort of idea of what it could be.

Last night, we were up for about 4 hours straight. She was in tears and in pain- all over, but MOSTLY in her left rib cage area. Went into pain management DR. today and he examined her and found that there is 'significant amounts of inflammation' in her diaphragm area- which could mean a huge list of different things. It could be anything from a severe problem to a 'minor thing that can be fixed with medication.'

We are worried about inflammation in her organs, or blockages causing problems or who knows what. All the other pains are still there, but this one is 'not typical for Fibro.' as we were told by the peds. fibro. pain management department.

So tomorrow, she is set up for testing...blood work, scans and who knows what else. I am a nervous wreck, because the Dr. was really concerned. Plus this has been an on-going issue for a few weeks now, but getting worse.
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Old 12-02-2013, 09:36 PM   #1977
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Quote:
Originally Posted by pannm
Had a bit of an issue over the last few days with our daughter. I'm wondering if anyone has/has known someone with fribro. who has had rib cage problems. My Daughter has a left rib cage pain that is really horrible. Her rib cage is occasionally 'misplaced/floating/elevated' to the point that the difference is quite visible. The bottom of her left rib looks like it's bending outwards at times.

We've spoken to two different Dr.s about it. We were told that it's 'something we need to keep an eye on.' but never given any sort of idea of what it could be.

Last night, we were up for about 4 hours straight. She was in tears and in pain- all over, but MOSTLY in her left rib cage area. Went into pain management DR. today and he examined her and found that there is 'significant amounts of inflammation' in her diaphragm area- which could mean a huge list of different things. It could be anything from a severe problem to a 'minor thing that can be fixed with medication.'

We are worried about inflammation in her organs, or blockages causing problems or who knows what. All the other pains are still there, but this one is 'not typical for Fibro.' as we were told by the peds. fibro. pain management department.

So tomorrow, she is set up for testing...blood work, scans and who knows what else. I am a nervous wreck, because the Dr. was really concerned. Plus this has been an on-going issue for a few weeks now, but getting worse.
how old is she? You can pm me. I've had upper chest issues.
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Old 12-02-2013, 10:18 PM   #1978
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Originally Posted by pannm View Post
Had a bit of an issue over the last few days with our daughter. I'm wondering if anyone has/has known someone with fribro. who has had rib cage problems. My Daughter has a left rib cage pain that is really horrible. Her rib cage is occasionally 'misplaced/floating/elevated' to the point that the difference is quite visible. The bottom of her left rib looks like it's bending outwards at times.

We've spoken to two different Dr.s about it. We were told that it's 'something we need to keep an eye on.' but never given any sort of idea of what it could be.

Last night, we were up for about 4 hours straight. She was in tears and in pain- all over, but MOSTLY in her left rib cage area. Went into pain management DR. today and he examined her and found that there is 'significant amounts of inflammation' in her diaphragm area- which could mean a huge list of different things. It could be anything from a severe problem to a 'minor thing that can be fixed with medication.'

We are worried about inflammation in her organs, or blockages causing problems or who knows what. All the other pains are still there, but this one is 'not typical for Fibro.' as we were told by the peds. fibro. pain management department.

So tomorrow, she is set up for testing...blood work, scans and who knows what else. I am a nervous wreck, because the Dr. was really concerned. Plus this has been an on-going issue for a few weeks now, but getting worse.
Yes, but the pain was right in the middle of my chest. My rheumy had me take ibuprofen for a full week to bring the inflamation down. It used to hurt so bad that just wearing my seat belt almost drove me to tears. I also had a really bad bicycle accident when I was younger and the left side of my rib cage is flat and feels almost inverted at some points but doctors have always saif it was fine Doesn't feel fine.

Hope its just some bad inflammation for your daughter and not something more serious.
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Old 12-02-2013, 11:14 PM   #1979
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Quote:
Originally Posted by pannm
Had a bit of an issue over the last few days with our daughter. I'm wondering if anyone has/has known someone with fribro. who has had rib cage problems. My Daughter has a left rib cage pain that is really horrible. Her rib cage is occasionally 'misplaced/floating/elevated' to the point that the difference is quite visible. The bottom of her left rib looks like it's bending outwards at times.

We've spoken to two different Dr.s about it. We were told that it's 'something we need to keep an eye on.' but never given any sort of idea of what it could be.

Last night, we were up for about 4 hours straight. She was in tears and in pain- all over, but MOSTLY in her left rib cage area. Went into pain management DR. today and he examined her and found that there is 'significant amounts of inflammation' in her diaphragm area- which could mean a huge list of different things. It could be anything from a severe problem to a 'minor thing that can be fixed with medication.'

We are worried about inflammation in her organs, or blockages causing problems or who knows what. All the other pains are still there, but this one is 'not typical for Fibro.' as we were told by the peds. fibro. pain management department.

So tomorrow, she is set up for testing...blood work, scans and who knows what else. I am a nervous wreck, because the Dr. was really concerned. Plus this has been an on-going issue for a few weeks now, but getting worse.
Oh Pannm you guys have been through so much lately. (((HUGS)))I have had chest/rib pain. Makes wearing a bra, tight clothing and seat belts quite painful. I often have to take a combo of vicoden and ativan just to put on my clothes, take a moment to cry then shake it off as best I can . I don't think we have ever noticed swelling associated with it. If I did it was minor. Sounds like rosanb has had a more similar experience.

Swelling is an issue with later stage lyme disease..I don't think you ever mentioned whether she was tested for that yet my husband has major issues with swelling associated with lyme. It is consistently getting better with treatment. When my brother had lyme back in 1988 they had to keep taping fluid off his knees. He was on crutches it was so bad. Then he got the diagnosis and within 3 days of iv antibiotics he was doing better. He was 15 at the time. There is a group of drs that diagnose lyme if some but not all of the markers are met because the tests have been quite unreliable and they feel if the Pt has symptoms and responds to treatment that should be enough. Its a political fight among groups of Dr's but something to consider if she is/has been tested and only has a few of the several titer markers that usually diagnose lyme. It really sucks to have to be your own detective. The Dr's are really trying with these things but it seems like we really need to help put the pieces together because we live these nuances every day.

Sending healing thoughts your way
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Old 12-03-2013, 12:38 AM   #1980
mommasita
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Quote:
Originally Posted by pannm View Post
Had a bit of an issue over the last few days with our daughter. I'm wondering if anyone has/has known someone with fribro. who has had rib cage problems. My Daughter has a left rib cage pain that is really horrible. Her rib cage is occasionally 'misplaced/floating/elevated' to the point that the difference is quite visible. The bottom of her left rib looks like it's bending outwards at times.

We've spoken to two different Dr.s about it. We were told that it's 'something we need to keep an eye on.' but never given any sort of idea of what it could be.

Last night, we were up for about 4 hours straight. She was in tears and in pain- all over, but MOSTLY in her left rib cage area. Went into pain management DR. today and he examined her and found that there is 'significant amounts of inflammation' in her diaphragm area- which could mean a huge list of different things. It could be anything from a severe problem to a 'minor thing that can be fixed with medication.'

We are worried about inflammation in her organs, or blockages causing problems or who knows what. All the other pains are still there, but this one is 'not typical for Fibro.' as we were told by the peds. fibro. pain management department.

So tomorrow, she is set up for testing...blood work, scans and who knows what else. I am a nervous wreck, because the Dr. was really concerned. Plus this has been an on-going issue for a few weeks now, but getting worse.
I can't imagine the worry for you... I wish I had something magical.. I will keep thinking and praying for you both>>XO

I have a lot of inflammation, but I have Sjrogen's Syndrome as well.. Very hard to diagnose from what I have learned over the years. I was one of the lucky ones, but sadly there is zippo to do for it attacking my organs..
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