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Old 10-11-2013, 09:34 PM   #1921
rosanab1031
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It's been an EXHAUSTING week! Had to drive all over the place and have people bugging me for stuff that shouldn't even be my responsibility anymore!

I'm really starting to hate my job. The politics in my district are just getting plain STUPID! I have actually applied for a part time job. I will give you all one guess as to where

The hope is that if I get the PT job maybe it can build up to a FT and then I won't have to worry about the stupid school politics!

I can't find my meiclizine because I simply can't remember where I put it and they were all out when I tried to get some more so on top of being exhausted I am also dizzy and nauseated

Luckily no big plans for the weekend. Just a small trip to LA for some French macarons and studying for the GRE. Gonna try to get my butt into an aerobics class tomorrow because I have definitely been letting myself go.

Hope things are going well for everyone else!

Much love and many gentle hugs for all
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Old 10-12-2013, 01:09 AM   #1922
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Quote:
Originally Posted by SeaSpray View Post
Hi everyone:

Just wanted to stop in and see how everyone is doing and to say "hello".

Not too much new with me; same old pain and fatigue, but now I'm also experiencing sporadic muscle weakness. This evening my arms feel like they're weighed down and it's an effort to even lift them to type.

I only work 26 hours a week and some weeks I feel like I barely make it through. I called out of work today and basically slept most of the day, so I didn't even accomplish much of anything at home either.

Tomorrow is the 10th anniversary of my mother's death. My siblings and their families are all getting together in NJ, but we're not going. I just can't physically handle any kind of trip right now. I'll probably call and speak to all of them while they're having dinner together.

I hope you're all doing ok. Please check in if you can, even just a quick "hello" post.

Hugs to all.
to you on this day especially... Sorry to hear how rough it has been.. As easy as it is for me to say it, try not to feel guilty... You are doing as best as you can do...

Quote:
Originally Posted by rosanab1031 View Post
It's been an EXHAUSTING week! Had to drive all over the place and have people bugging me for stuff that shouldn't even be my responsibility anymore!

I'm really starting to hate my job. The politics in my district are just getting plain STUPID! I have actually applied for a part time job. I will give you all one guess as to where

The hope is that if I get the PT job maybe it can build up to a FT and then I won't have to worry about the stupid school politics!

I can't find my meiclizine because I simply can't remember where I put it and they were all out when I tried to get some more so on top of being exhausted I am also dizzy and nauseated

Luckily no big plans for the weekend. Just a small trip to LA for some French macarons and studying for the GRE. Gonna try to get my butt into an aerobics class tomorrow because I have definitely been letting myself go.

Hope things are going well for everyone else!

Much love and many gentle hugs for all
I hope you can relax this weekend.. And Good luck with the job

Not much new here.. I see the Neuro on Tuesday, and have to explain all my episodes .. I then see the Ortho Surgeon Thursday for my torn rotator cuff, and I believe the other arm has gone as well. Same Symptoms..

We are still in renovations, so trying to help as best (or as little, lol) that I am able..

Thanksgiving for us Canadians, but the kids are going to the in-laws, I no longer partake.. Normally I would cook and invite Mom, but she is still bed ridden in diaper, and that isn't happening.. Maybe DH and I will go to dinner. IF only all our $ wasn't going into the house..

Gentle hugs all around
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Old 10-24-2013, 11:32 AM   #1923
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Hey everybody! It's been a little while now so just wanted to check in and see how everybody is doing.

I have been trying to exercise more and hurt myself so I was out of comission for a week. Ooops

Went back to it this week though. Muscles are sore but its a good feeling I need to get back into shape! My joints aren't appreciateing the extra weight I have but on

Hope you all are doing well! Much love and many gentle hugs to all!
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Old 10-24-2013, 11:00 PM   #1924
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Ouch, hope you are resting that~.

I saw the surgeon for my rotator tears, and NOW he is almost sure i have looseflap cuff, so now I am awaiting an MRI with contrast. No work, not even light duty, so I am sort of glad the insurance company heard this from such a recommended surgeon..

He spoke briefly of the surgery to repair with anchoring the bone and then fixing the tears... He could hear the bone on bone, so he is 95% sure, and the MRI will confirm or not confirm I guess.

My son had his graduation ceremony Sunday, and got a part time job at McDonald's, so things are coming alone nicely.. He should get his license in a week.

Take care everyone, and lots of gentle hugs.

Praying for a miracle for my 25 year old cousin, who has another brain tumor, affter being free for 10 years.. It doesn't look very good, and we need a miracle..
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Old 10-29-2013, 10:00 AM   #1925
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Hi all!!!

Its been soooo long since I could get back here. I'm so glad to see the thread thriving! Momma, seaspray I'm glad you were here the past few months. The last time I was down so long the thread got really quiet and I was afraid I would lose touch with the wonderful people on the Dis.

To all the new members I'm not going to be able to catch up with all your questions because I cant remember them all but I go almost exclusively wholistic as medicine has failed me the past 20yrs. I was diagnosed at 27 with fibromyalgia, cfids, chronic toxoplasmosis and complicated now called complex migraines.

To the mom with with a diagnosed child I cant even imagine how hard that would be. Has she been tested for lyme? It can cause all these symptoms and is treatable but often misdiagnosed especially for those not in the north east. Chronic lyme is real. My husband has it and is on long term treatment that's working I have found ginger has been helpful for pain. You can either find ways to eat it like ginger beer (didn't seaspray mention that?) or take capsuls, garlic tabs helped with stomach issues, flax oil for fatigue and pain. You have to take thm for a few months before you really know if they work. But as with meds kids can be different and since your Dr doesn't want to do meds sounds like you can ask if those would be good for your DD without being laughed at. When I started flax Drs thought I was crazy. Now how many Drs tout the benefits of flax?... When I worked in a Childrens Pysch Hospital we used a lot of visualization at night. I found this really helped me when I got sick. nature sounds where I could "put myself" in a favorite place like camping or the shore can be relaxing. I also imagined that the pain drained out of my hands and feet into the ground away from me. This has become a constant thought running in the back of my mind. You may want to check out Patti Peels mediation sleep games for kids http://www.amazon.com/s/ref=nb_sb_ss...k%3Apatti+teel

Hope this helps!
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Old 10-29-2013, 10:58 AM   #1926
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Seaspray so sorry to hear about your driving issues! I know how scary that can be. When I was first diagnosed I stopped driving because on my last day of work I drove around a road that encircled a downtown area near my home. I drove around and around and around not remembering how to turn off and get home! I drove through that spot upwards to 8 times a day going to and from clients homes but I just couldn't remember! I didn't drive again for several years. I found New England traffic too overwhelming and my "circuits fried" and my brain just couldn't handle it. That with my migraine vision issues and it was too much. The good news it that is no longer the case. I live in an area where I am 5 miles from everything important and nary a car in site. Plus I understand my queues after 18yrs and know when to go home. The times this is happening what is different? Are you panicking that this might be the end of driving? Having had this same experience I can reassure you that this does not have to be the end of driving for you because you have the advantage of knowing your illness. I keep trips where I am alone short. I know on a bad day I have 15 min to read my change in symptoms and get home. 30 min on what seems like a good day. Any longer than that and I hitch a ride or have a friend ride with me who can take over (like on a girl scout trip). You probably already do this too. So its just a matter or looking for another set of queues that lead to this symptom. Hang in there!

Momma,

What can I say. WOW so sorry you are having to deal with all these family issues and shoulder stuff too. Sending good thoughts to your cousin with brain tumor


As for me there has been a very good reason why I was MIA. Right after my last post my body switched from a pain, migraine cycle to a fatigue cycle. Then I had a really good day and with no pain went crazy cleaning. 14hr! It felt great. I got things done that I had been wanting done for 6months. Then on the way home from walmart buying cleaning supplies I felt a small knot in my lower back. My Dad was coming in two days so I hit the muscle relaxers and a heating pad. the pain got worse. The entire time my family was here I was laid up in a chair. The next week my DH and DS had big camping trip with the Boy scouts sleeping on the battlefield at Gettysburg. I didn't tell DH but back was BAD..and I got them off before he noticed. It then progressed to where I couldn't breath, couldn't sit, couldn't walk or sleep on my Rt side at all without a 10 on the pain scale. It became like full on, late stage back labor 24/7. Endless, praying to blackout pain. In the middle of this our well went out and I had to deal with the stress of dealing with paying for/and repairing our entire well set up. Luckily my girls managed to care for themselves with my supervision. When my husband got home we went strait to the ER as I had already gone to walking in 5 miles from my house and ruled out uti. Well the drs did nothing! Well let me rephrase that they gave me IV deluaded, said they would take and exray then supervising dr said have you ever had valium?? I said no then she said well you are going to LOVE IT which in my drugged state I thought was an odd thing for a Dr to say unless she wanted me to become and addict. She gave me and IV shot of valium and SENT ME HOME!!! Half way home I was in pain again and no answer. It was so bad that I started thinking of my options if we couldn't get help because I couldn't stand one more minute like that! My dear friend insisted I see a chiropractor but with the well going out I don't have the cash for the extended visits just the work up. With her help I got in and found out my vertabre had moved and my nerves were being crushed between them! I could not move and inch without rubbing on them. 5days of Chiro the first few weeks then three now two and I am finally feeling myself. About day three in I began to think maybe I would survive this. Then the Chiro taped my back up with athletic tape to hold the position and I really felt like I might improve. The tape lasts about a week and DH and I do it now to save the expense. My 51 days of straight migraines back in January-March felt like a walk in the park compared to this. Even my 14yr old DD who takes pride and not giving a care about anything refused to go out with friends because she did not want me alone when my DH had to go out. (of course she wouldn't admit it to me only her DAD for fear I might think she cared lol ) Just as I was feeling better our oldest cat died. So it has been a hard few months for the kids. First terrified of what was happening to me then losing their precious kitty who each night went room to room helping each one go to sleep.

So that's my story. I really missed you guys and felt so guilty not checking in but I could bearly keep a thought in my head. I'm feeling soooo much better now I may even had a new way to treat my migraines.. Time will tell.

Sending pain free vibes and pixie dust to all
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Old 10-29-2013, 11:50 AM   #1927
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Long time lurker, occasional poster, just dropping by to say hi again.

I'm 46 and having a hysterectomy next week. I'm hoping that will help with my flares that seem to coincide with "that time of the month". I know the surgery/recovery itself won't be easy, even though I've told the doctor that my fibro doesn't like big things like surgeries, he seems to think I'll be on my feet in no time (here's hoping!).

If anyone has any good hints or helpful suggestions as to how to keep busy and heal up fast after surgery, I'd love to hear them!

Thanks!

Terri
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Old 10-29-2013, 01:02 PM   #1928
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Originally Posted by yoopermom View Post
Long time lurker, occasional poster, just dropping by to say hi again. I'm 46 and having a hysterectomy next week. I'm hoping that will help with my flares that seem to coincide with "that time of the month". I know the surgery/recovery itself won't be easy, even though I've told the doctor that my fibro doesn't like big things like surgeries, he seems to think I'll be on my feet in no time (here's hoping!). If anyone has any good hints or helpful suggestions as to how to keep busy and heal up fast after surgery, I'd love to hear them! Thanks! Terri

I know what you mean about the monthly roller-coaster. I never had PMS but since entering peri menopause I have PFMS. My fibro symptoms get crazy worse a week or so out. I'll wake up and go whoa whats up today..then a few hours later I figure it out. You would think that after two years I would have figured it out but nope..forget every month . Maybe a good distraction would be going through old photos and starting a digital scrapbook.. I have 14yrs to catch up on, you could do mine LOL Here's hoping it is the beginning of some control and predictability over your symptoms. I hear the hormonal slam can be rough to start so hang in there!
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Old 10-29-2013, 01:09 PM   #1929
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Quote:
Originally Posted by tiggspring
Seaspray so sorry to hear about your driving issues! I know how scary that can be. When I was first diagnosed I stopped driving because on my last day of work I drove around a road that encircled a downtown area near my home. I drove around and around and around not remembering how to turn off and get home! I drove through that spot upwards to 8 times a day going to and from clients homes but I just couldn't remember! I didn't drive again for several years. I found New England traffic too overwhelming and my "circuits fried" and my brain just couldn't handle it. That with my migraine vision issues and it was too much. The good news it that is no longer the case. I live in an area where I am 5 miles from everything important and nary a car in site. Plus I understand my queues after 18yrs and know when to go home. The times this is happening what is different? Are you panicking that this might be the end of driving? Having had this same experience I can reassure you that this does not have to be the end of driving for you because you have the advantage of knowing your illness. I keep trips where I am alone short. I know on a bad day I have 15 min to read my change in symptoms and get home. 30 min on what seems like a good day. Any longer than that and I hitch a ride or have a friend ride with me who can take over (like on a girl scout trip). You probably already do this too. So its just a matter or looking for another set of queues that lead to this symptom. Hang in there!

Momma,

What can I say. WOW so sorry you are having to deal with all these family issues and shoulder stuff too. Sending good thoughts to your cousin with brain tumor

As for me there has been a very good reason why I was MIA. Right after my last post my body switched from a pain, migraine cycle to a fatigue cycle. Then I had a really good day and with no pain went crazy cleaning. 14hr! It felt great. I got things done that I had been wanting done for 6months. Then on the way home from walmart buying cleaning supplies I felt a small knot in my lower back. My Dad was coming in two days so I hit the muscle relaxers and a heating pad. the pain got worse. The entire time my family was here I was laid up in a chair. The next week my DH and DS had big camping trip with the Boy scouts sleeping on the battlefield at Gettysburg. I didn't tell DH but back was BAD..and I got them off before he noticed. It then progressed to where I couldn't breath, couldn't sit, couldn't walk or sleep on my Rt side at all without a 10 on the pain scale. It became like full on, late stage back labor 24/7. Endless, praying to blackout pain. In the middle of this our well went out and I had to deal with the stress of dealing with paying for/and repairing our entire well set up. Luckily my girls managed to care for themselves with my supervision. When my husband got home we went strait to the ER as I had already gone to walking in 5 miles from my house and ruled out uti. Well the drs did nothing! Well let me rephrase that they gave me IV deluaded, said they would take and exray then supervising dr said have you ever had valium?? I said no then she said well you are going to LOVE IT which in my drugged state I thought was an odd thing for a Dr to say unless she wanted me to become and addict. She gave me and IV shot of valium and SENT ME HOME!!! Half way home I was in pain again and no answer. It was so bad that I started thinking of my options if we couldn't get help because I couldn't stand one more minute like that! My dear friend insisted I see a chiropractor but with the well going out I don't have the cash for the extended visits just the work up. With her help I got in and found out my vertabre had moved and my nerves were being crushed between them! I could not move and inch without rubbing on them. 5days of Chiro the first few weeks then three now two and I am finally feeling myself. About day three in I began to think maybe I would survive this. Then the Chiro taped my back up with athletic tape to hold the position and I really felt like I might improve. The tape lasts about a week and DH and I do it now to save the expense. My 51 days of straight migraines back in January-March felt like a walk in the park compared to this. Even my 14yr old DD who takes pride and not giving a care about anything refused to go out with friends because she did not want me alone when my DH had to go out. (of course she wouldn't admit it to me only her DAD for fear I might think she cared lol ) Just as I was feeling better our oldest cat died. So it has been a hard few months for the kids. First terrified of what was happening to me then losing their precious kitty who each night went room to room helping each one go to sleep.

So that's my story. I really missed you guys and felt so guilty not checking in but I could bearly keep a thought in my head. I'm feeling soooo much better now I may even had a new way to treat my migraines.. Time will tell.

Sending pain free vibes and pixie dust to all
HI TIGG!

Glad to have you back and so sorry for the loss of the fuzzy one I still cry over the animals I have lost. How old was the kitty?

Happy to hear the chiropractor is working out! I don't go as often as I should because of my weird hours at work.

Gonna go pick up some more ginger beer tonight. Haha. Definitely makes me feel better

Welcome back again!

Much love and many pain free hugs to all!
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Old 10-30-2013, 02:27 PM   #1930
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Tigg: That sounds like pure hell.. Glad you are on the road to feeling better.. Sorry about your loss

Hi there yoopermom.. Thinking and praying for you... Let us know how you are when you can.. I do find that time of the month to be worse...


Hi to everyone and gentle hugs..
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Old 10-31-2013, 07:49 AM   #1931
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It's been absolutely miserable for my daughter this month. We've done everything we can think of, we've been to the E.R. twice (our current method to get quick pain relief!). We are working on long term management for all of the side effects. To me, it seems like a joke at this point. We are very frusterated. All of her migraine and anti-anxiety medications, IBS medication...medication for her pain, meds for this and that- none of it seems to be 'playing well with each other' as the Dr. put it. It will take time to get the med levels, types and varieties correct so they work for her. Even then, when ever she gains weight or gets older, the meds will need to be changed because they won't be effective for long. Her weight is a roller coaster. She was in the 'low weight' category two months ago, now she's concidered underweight and not thriving. Once she feels good, then she'll move back up to the low-moderate range. I worry that she'll get the flu or something like last year and it'll put her in the hospital for another 2-3 weeks. She's gotten a flu shot for the past three years, doesn't seem to do much. She still gets a nasty flu every year that lasts for a long time- but her Dr.s say that she could get it even worse or more frequently with no shot at all.

She's not old enough to be placed on fibro. medication. So, for now, we are treating (or attempting to treat) the side effects. It's been miserable lately, because some of the meds are making things worse. We'll get there.

It crushes me to see her in the amount of pain my little 9 year old sweetheart is in. The Dr. prescribed Oxycodone and tylenol for pain, which seems to work for some things. Her biggest complaint with it is that it makes her tired, but she still can't sleep because of 'tight and uncomfortable' feelings. She's been so excited about our big fall festival and trick or treating tonight. I hope we can make it as enjoyable as we can.
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Old 10-31-2013, 10:23 AM   #1932
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Originally Posted by pannm View Post
It's been absolutely miserable for my daughter this month. We've done everything we can think of, we've been to the E.R. twice (our current method to get quick pain relief!). We are working on long term management for all of the side effects. To me, it seems like a joke at this point. We are very frusterated. All of her migraine and anti-anxiety medications, IBS medication...medication for her pain, meds for this and that- none of it seems to be 'playing well with each other' as the Dr. put it. It will take time to get the med levels, types and varieties correct so they work for her. Even then, when ever she gains weight or gets older, the meds will need to be changed because they won't be effective for long. Her weight is a roller coaster. She was in the 'low weight' category two months ago, now she's concidered underweight and not thriving. Once she feels good, then she'll move back up to the low-moderate range. I worry that she'll get the flu or something like last year and it'll put her in the hospital for another 2-3 weeks. She's gotten a flu shot for the past three years, doesn't seem to do much. She still gets a nasty flu every year that lasts for a long time- but her Dr.s say that she could get it even worse or more frequently with no shot at all.

She's not old enough to be placed on fibro. medication. So, for now, we are treating (or attempting to treat) the side effects. It's been miserable lately, because some of the meds are making things worse. We'll get there.

It crushes me to see her in the amount of pain my little 9 year old sweetheart is in. The Dr. prescribed Oxycodone and tylenol for pain, which seems to work for some things. Her biggest complaint with it is that it makes her tired, but she still can't sleep because of 'tight and uncomfortable' feelings. She's been so excited about our big fall festival and trick or treating tonight. I hope we can make it as enjoyable as we can.
I'm so sorry you guys are having such a hard time. I cant imagine.

Have you tried probiotics for the IBS? My daughter has stomach troubles and a friend of mine thought her DD was gluten intolerant and restricted her diet for a yr with little luck. She gave her probiotics after her dr suggested that the antibiotics she had been on may have messed with her gut balance. Her stomach/bowel issues went away. My DD has taken them a few times and each time it has worked for her too. Best of all there is no downside to them. Has she used a heating pad on her chest? I used to get bad chest tightness that mimicked many things. A heating pad and magnesium helped with this.

When I was first sick they put me on all sorts of meds and I went from barely functioning to bedridden for two years. Very much like your DD I was always in crisis. Heart attack symptoms, stoke symptoms, appendix symptoms, asthma symptoms (which were muscle spasms in my chest). I Left my house exactly 5 times one year. That's when I put and end to it and refused meds except the two that worked vicoden and Ativan. Medications and physical therapy..any thing that pushes my body causes a BAD reaction. That is how MY fibro works. Luckily I had a Dr who after two years of trying everything agreed that sometimes intervention makes things much worse. The problem with the two medications I still take is you become dependent and they don't work so I cannot take them every day. At most 10 days in a row or they stop working and I have to use more to get same effect and I feel REALLY BAD without them. That's not because they are working but because I became dependent and was going through a type of withdrawal. I worked in the medical field and the Psychiatric field and was blessed to know this or I easily could have thought the opposite and kept upping my dose. That's how so many of pain patients become addicts. We stopped taking the flu shot here as we kept getting really sick with it. Both after the shot and then months later from the real flu. We stopped taking the flu shot five years ago after we had a family run that lasted 9 weeks. We have not had the flu since. I do not like what have read in medical journals regarding its effectiveness in Canada, Australia, UK etc. Those systems do not have a financial incentive to push the flu shots and are more likely to report the good and the bad. I am not anti flu shot especially if there is a lung issue involved but I do not think they work very often either. Last year when you brake down the numbers 20 percent of the population was expected to get the flu without the shot. When you look at its effectiveness and your chances of not getting the flu it only improved your odds by 5 percent. Not worth my risk of fms side effects. Do you know anyone who didn't get the shot and spent weeks in the hospital? The only families I know that got the flu last year ALL got the shot. That's my experience. As far as the lyrica, humara ect I have not tried them because they carry a black box label which is the fda highest warning. They have been shown to increase the chances of lymphomia, leukemia and other similar diseases. While FMS feels like it could kill me (especially 18 yrs ago) Leukemia can definitely kill me. Other members here have tried them with mixed results but they can better talk to cost benefit than I can.

I guess what I'm trying to say is is it time to back off all the meds for awhile and see what happens? Do you feel you have exhausted all medical interventions that will BENIFIT your DD? I had and it was time to stop. Some things Drs cant fix and right now my FMS is one of them. When I did this it was hell for a couple of months especially the Ativan which I had become dependent on. I had to do it slowly or my body seriously revolted. Now if I try something new I do it alone 1 med or treatment at a time so I know if its working and/or hurting me and I give it a few months to see if I get dependent to it. which means in the long run it is useless to me. you cant keep upping doses forever. While my life is complicated since I stopped the interventions I do have a life. I am not bedridden 24/7.

I will say that the one thing that has worked in the past 18 yrs is Chiropractic. I had tried it briefly before I got sick (like 2 months) but didn't feel it did much. After this last back issue which was not FMS but made complicated y it the Chiropractic has been AMAZING. For the first time In 18 yrs I feel like I fit in my skin. I didn't have the words for my uncomfortable feelings until they were gone. Its like I was wearing clothes that where cockeyed on my body. My skin never seemed to fit. In addition to not having back pain anymore this uncomfortable uneasy feeling is gone. Unfortunately Chiro is expensive. We could never afford it before and can bearly now with a $40 co pay with each visit and a visit or two a week it adds up but I think this is the first thing outside of all the supplements that has helped.

If you give me a list of your DD symptoms I can give you a list of supplements that have taken the edge off those symptoms for me. You will need to check with your Dr for any objections because children are very different than adults and I can tell you from my work experience that when I a child has a complication it tend to move much quicker than and adult. My dr was great about this but my girlfriend has a holistic pediatrician because her DD had issues with vaccine reactions and regular Drs didn't get that. She still get her shots just on a different schedule.

I hope this gives you a place to start some research for alternatives for your DD. It will get better you just have to find what works for her. That may be mainstream medical, it may not.

Sending your DD pain free vibes and pixie dust

Quick hi to all my other fibro friends
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Old 11-01-2013, 08:50 AM   #1933
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My DD's symptoms as of the last few weeks are pretty steady, on-going and horrible...

80% of her day, she is experiencing pains- in the lower back, neck, shoulders, legs, arms, hips. We've been doing a mix of Tylenol and Oxycodone. I have really been trying to limit the use of oxy, but there are days where she desperately needs SOMETHING that works. We will talk to the Dr. about chiro. the peds. rhuemetology dpt. has a massage/chiro. team that works with kids. We heard about it through a nurse there, so it's our next step after her appointments in Nov.

The oxy helps with the pain, but she is experiencing what she calls "weird, uncomfortable, tightness" in her chest, in her fingers, knees, arms and legs. It gives her a restless feeling and she is very uncomfortable with it. It's actually what is preventing her from getting a good nights sleep!

Yes, she has been on probiotics for over a year. Seems to help a little, but not lately. We don't know what is causing her tummy troubles this month. They are getting tests scheduled for Nov. sometime. She will probably have to drink that horrible chalk-y tasting crap again (she would rather do anything else BUT that ever again!) and have pictures done of her digestion. She isn't constipated. That's the first thing they always check with her, since she's had problems with it in the past. The Dr.s have said to use absolutely no ibuprophen products (they can add to stomach upset), but they don't help her with pain anyways. She's been using Miralax for a while now. If we stop that, she will be constipated like crazy again.

She complains of chest 'pain' or tightness a lot. They started her on prevacid- because they think it's acid reflux. (also could be why the stomach pain is there, we'll know more soon). We've tried a few 'natural' acid reflux prevention methods with zero luck so far.

She goes for days with out feeling hungry...forcing herself to eat something. Her weight is a complete roller coaster of ups and downs. She never gains much, just enough to get her over the 'underweight' category line when she's feeling well. She's lost 4 lbs. this last month.

Her migraines are about the only thing that aren't running wild this month. She's had one bad one that lasted 2 days. For the most part, they are under control. She takes a daily medication that the ped.s neuro Dr. prescribed. It is working well, so we hate to mess with that. She was taking 3 of those pills a day. Since we started homeschooling her two years ago, she's down to 2. Some sort of progress I guess.

Anxiety, Anxiety, Anxiety!!!! She's on something for it right now, but it's not working. I hate to increase the dose, but we need to do SOMETHING. She's nervous, sad, upset, connected to me at the hip. I know it has a lot to do with her not feeling well too, but it's been bad lately.

There are days she won't even consider leaving the house, there are days where we get her out of the house and all she wants to do is go back home.

We are nervous for her when we go on vacation in Jan...our big Disney World trip. She's very excited and all, but also very worried. She's worried that she will still feel like this when we go. She's worried that she'll be in pain when we are there, worried about eating, worried about everything.

Hopefully, we'll figure some things out in her appointments this month.
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Old 11-01-2013, 01:51 PM   #1934
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Pannm so glad you were able to get back on so soon

I'm going to try to pop in any answers I can give into you post.
Quote:
Originally Posted by pannm View Post
My DD's symptoms as of the last few weeks are pretty steady, on-going and horrible...

80% of her day, she is experiencing pains- in the lower back, neck, shoulders, legs, arms, hips. We've been doing a mix of Tylenol and Oxycodone. I have really been trying to limit the use of oxy, but there are days where she desperately needs SOMETHING that works. We will talk to the Dr. about chiro. the peds. rhuemetology dpt. has a massage/chiro. team that works with kids. We heard about it through a nurse there, so it's our next step after her appointments in Nov.I'm soo glad you have access to a pediatric chiro though your Dr. I really think with some time this may help with the uneasy feeling, cramping etc and speaks volumes on how flexible the practice is which is key in finding what helps your DD. Yea mom for finding such great care it is a hard thing to do! My Chiro uses a pro adjuster machine that measures progress as it taps me into place as well as several hands on techniques. The pro adjuster was easier for my fibro to handle at first but its loud. There other mechanical forms out their too. He also introduced me to biofreeze which is similar to bengay but natural and worked better for me. you can buy it on amazon

The oxy helps with the pain, but she is experiencing what she calls "weird, uncomfortable, tightness" in her chest, in her fingers, knees, arms and legs. It gives her a restless feeling and she is very uncomfortable with it. It's actually what is preventing her from getting a good nights sleep! I am fairly certain I know what this is. When I first got sick I constantly had episodes where I couldn't breath (they ? asthma and allergies), episodes where my arm/face when numb(? stroke), leg pain (?restless leg) and chest pain (? heart issues). When I got pregnant my FMS when into remission each time and returned about 6months post. Slowly I would begin to have muscle spasms and as they progressed I noticed that you could see/feel my chest muscles quiver and as I got worse that stopped because muscles were so tight but once they got locked up I got episodes of numbness and incredible since that something is wrong. It triggered a flight or flight response by my body that made it feel like the pain/ tightness/ shortness of breath could be fatal. I'm not sure a 9 year old could ever express that in any word by anxiety but she may not be anxious at all but feeling the adrenalin that comes from the bodies fight mechanism. Now depending on what anti anxiety med she is on it may or may not help this. I tried many and the only one that worked was Ativan which can be used as a muscle relaxer too. I didn't now it at the time but the relaxer part was what helped because I never did feel anxious. What has helped me is magnesium as a muscle relaxer, ginger root as a pain reliever (my understanding is that Celebrex came about from the study of ginger root) it works good on stomach issue too, vitamin d for all of the above. Most importantly is relaxing into the feeling, knowing it is not a reason to panic and trying to ignore it so you lower that fight or flight adrenalin rush. Ask her if she has ever felt so tired or in so much pain that she didn't want to move but her mind wanted to run away? If so she may get those adrenalin rushes that anyone would feel if they suddenly couldn't breath, had pressure on your chest was held against their will. ect It feels like anxiety but anxiety is when you emotionally react for no good reason. If you feel that way because your body is revolting that's reasonable. So once she know that she needs to work on deep breathing through an episode, visualization of something happy and the only meditation I found that worked is sound meditation that uses long low sounds with a voice guiding me through. The kids meditation I posted earlier may be better for your DD

Yes, she has been on probiotics for over a year. Seems to help a little, but not lately. We don't know what is causing her tummy troubles this month. They are getting tests scheduled for Nov. sometime. She will probably have to drink that horrible chalk-y tasting crap again (she would rather do anything else BUT that ever again!) and have pictures done of her digestion. She isn't constipated. That's the first thing they always check with her, since she's had problems with it in the past. The Dr.s have said to use absolutely no ibuprophen products (they can add to stomach upset), but they don't help her with pain anyways. She's been using Miralax for a while now. If we stop that, she will be constipated like crazy again. Ok this is the first thing I tried an alternative treatment for and it worked. I had ben on DBL doses of Zantac for severe stomach pain/acid reflux that landed me in er being checked for appendicitis. I found some articles on how garlic was a natural antibiotic and could kill H pylori bacteria in the gut. I figured what did I have to lose. I started taking garlic tablets w parsley (for odor) and in 3 months no more heartburn! That's when I started flax oil for energy, vitamin b sublingual for energy etc. I haven't had heart burn in 15yrs. Peppermint tea can be soothing for stomach upset but not heartburn

She complains of chest 'pain' or tightness a lot. They started her on prevacid- because they think it's acid reflux. (also could be why the stomach pain is there, we'll know more soon). We've tried a few 'natural' acid reflux prevention methods with zero luck so far. I really think she may be having muscle spasm and acid reflux. If a heating pad helps probably more muscle. You can get Oversized body pillow sized heating pads a Walmart and Amazon. Also taking baths or showers both at bedtime and upon waking to get her moving can help. It is the only way I survive vacations but I realize its not very practical on a day to day basis with a child. The steam will make her lungs feel better, wake he up and relax her.

She goes for days with out feeling hungry...forcing herself to eat something. This is a tough one. I too can barely eat but I still have gained a ton of weight. I did have a friend who lost weight like your DD. Will she drink a milk shake? If so you can make the shake with carnation instant breakfast mix. It will add vitamins/minerals and calories to an already calorie laden drink. I must have protein several times a day or I get a carb high and crash. That's something you may want to look at. Her weight is a complete roller coaster of ups and downs. She never gains much, just enough to get her over the 'underweight' category line when she's feeling well. She's lost 4 lbs. this last month.

Her migraines are about the only thing that aren't running wild this month. She's had one bad one that lasted 2 days. For the most part, they are under control. She takes a daily medication that the ped.s neuro Dr. prescribed. It is working well, so we hate to mess with that. She was taking 3 of those pills a day. Since we started homeschooling her two years ago, she's down to 2. Some sort of progress I guess.Good! don't mess with what works. You may want to pay close attention to her numbness or any eyesight issues. I have complicated migraines where I lose my vison, rarely speech issues and have facial/arm numbness that I get instead of a headache when I have a migraine. I use ice pack or Excedrin and I actually can lose the symptom but gain a headache WEIRD

Anxiety, Anxiety, Anxiety!!!! As a former child therapist I can tell you this may not be anxiety but what I described before. The treatment is the same. Learn to ignore the symptoms you no will not hurt you, learn to relax, and take things as they come. The harder you fight the symptoms in your mind the stronger they grow. I tell moms its like childbirth the harder you fight the pain the worse it is. This is very hard to explain to a child and it took me years to really master it. You will both have to be patient. Use music to get her moving and distracted. Maybe something like just dance for xbox/wii where she can get up and dance to a 3 min song and rest if she needs to. music relieves pain and moving is really important for anxiety and pain. If she feels they way I did she is clingy because it feels like he body is failing..it is a very scary feeling the key is to get her mind to focus on she has felt this way before and is fine so she needs to ignore as much as she can until you can find a solution. Does she have a diary? If so have her write about what went well each day so she can see it isn't all bad. She's on something for it right now, but it's not working. I hate to increase the dose, but we need to do SOMETHING. She's nervous, sad, upset, connected to me at the hip. I know it has a lot to do with her not feeling well too, but it's been bad lately.

There are days she won't even consider leaving the house, there are days where we get her out of the house and all she wants to do is go back home. What I did with my anxious kids was tell them they had to go out with their mom x min a day the each week increase that. So if a kid was in scouts I would say you have to go and stay 15 min and then if you get sick we can go home.. I did this with myself too. I would go for a drive w DH and see what I could do. Most times once she is out she will feel better. She has to know she must go and that she has and out if she needs it. The key here is consistency. You as mom must insist on it every day you agree to (5 day a week or whatever you think works). You must not give in or it will take longer to move forward. Expect it WILL get worse before it gets better. Kids learn if the complain enough they get what they want especially kids with real medical problems. It takes about 6 weeks to change a behavior (improve anxiety) and the first 3-4 weeks of being consistent are hard! It is really important that she learns she will be ok if she leaves the house and that she has to do it even if she doesn't want to. It is very easy to become homebound with this kind of pain she needs to know she can handle it. So I would set a reasonable goal for you both, really stick to it and make it longer over time. Use Disney as you incentive. You are Practicing for Disney!

We are nervous for her when we go on vacation in Jan...our big Disney World trip.Most important thing here is let her help plan. If she is invested it will go better. USE RIDEMAX!!! It helped me walk 5 min, stand 5 min and ride 5min. The pacing made my life so much better and we rarely waited in line. A big plus with kids is it eliminated arguing about what to do next. we all knew the computer had our ride preferences and told us where to go so we didn't wait in line. IT WORKED WONDERFUL. Don't tell her but it is not unusal to crash after a trip. You need to be prepared for a flare upon returning home. If you know that going in you wont be caught off guard when you get home. She's very excited and all, but also very worried. She's worried that she will still feel like this when we go. She's worried that she'll be in pain when we are there, worried about eating, worried about everything.

Hopefully, we'll figure some things out in her appointments this month.
Hope this helps! Down side to all these things is they take time but they can work.
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Old 11-01-2013, 04:15 PM   #1935
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Here is the ridmax site http://www.ridemax.com


Also I have found on vacations that I need to be a bit of a clean freek. We use germx before and after each ride and before after each run up to a buffet. We drive 16 hrs so when we make a pit stop everyone sprays their shoes with lysol then take them off. this stops the bathroom germs from getting onto the pillow, blankets and toys that inevitably get on the van floor. 6 stops time 5 trips to the bathroom is a lot of germs! We wipe down all door handles, remotes etc and we never use the glasses they have in hotel rooms. They are washed in the sinks often with no soap! ewww! We went to WDW during the bird flu crisis. We had friends that went the week before us and the week after. Guess who where the only people not to get sick??? Us Dealing with FMS is enough. I will not get sick too! One last thought on Vaca. We found that it worked better to do the park in sections. So at MK we would get there first thing take train back to Splash MT and do Adventureland and Frountierland. Next day walk in do rest of park and take train out. I also like to plan a sitdown meal or at least a meal in ac with a show before an after the meal. For example go to mickey philharmagic, eat then laugh factory. This is as close as you get to a rest in the parks. If you dont plan on going back to the room doing the shows with a meal gives you 2 1/2 hrs sitting in ac at the time she is most likely to be tired. If she falls asleep during a show she will be ready to get her second wind when she gets out. Ridemax always gave us extra time so we did most things twice! This trip will probably take a lot more planning. a good place to start is with the book OPEN MOUSE. It list all the rides, alternative entrances for evcs, noise concerns etc that you dont often think of until you get there. It helped me plan my trip.



Guess you now know why my tag says if I stop talking you know I'm dead..LOL
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