Fibromyalgia Thread

Discussion in 'disABILITIES Community Board' started by toocherie, Apr 30, 2009.

  1. mommasita

    mommasita DIS VETERAN Moderator

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    Hi. Thanks for the link. I have not been tested, but I will read it thoroughly.

    I wasn't on that cruise, but just recently sailed out of Bayonne. I believe it was 35$ per day. We stayed in Newark, and left our car there, and had transport to and from. Cruise package. MUCH CHEAPER.

    I did sail out of NYC a few years back on another line, and did the same thing. Although the transport is further, so not inclusive. We either took a taxi back/forth due to the cost of parking in NYC.. There are 2 ports believe, and here is one of them http://www.nycruise.com/manhattan-terminal/parking/.. This is the port we sailed from..

    I'd love that also. A 6 hour drive for us, but SOOO much easier than flying..:thumbsup2 We are standby, and it is often a bloody headache, and just the fact of not worrying what our luggage cost, and liquids. etc etc..
     
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  3. SeaSpray

    SeaSpray Disney World fan since 1976

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    Sorry to hear about the migraines. :hug: I've been getting them almost daily, too. :headache:

    It's like a bad cycle. Then every once in a while I find myself able to stay awake during the day and it's like getting a gift of "time". (if that makes any sense).

    :wave2: It was me, on the Magic out of NYC this summer. :sunny:

    We're planning to cruise in 2014, and out of NYC would be great, and if it's the Magic again, then even better! I LOVE the Magic. :love:


    We should all plan to cruise together in 2014! A Fibromyalgia Pals cruise! :cool2:
     
  4. mommasita

    mommasita DIS VETERAN Moderator

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    OOH. I'd love to cruise all together. Imagining it seems :cool1:

    Just wanted to stop in and say HI........I slept 4 hours, and have been awake since 5am.:crazy2:. Imagining it will be a long day. A nap is surely in there later.. Breakfast with the family and my Dad and his wife.

    I hope everyone is doing the best that they can......:flower3:
     
  5. brighteyes

    brighteyes DIS Veteran

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    Hi everyone,

    I have been gone a long, long, long, time. I have had so much going on, so many BIG changes!!

    My son's dad reappeared after being absent all his life and is now seeing him. That seems to be going well for them. Well, me, I am having a few issues with this whole thing, but that is another story.

    I went out to see my mother whom I have not seen for 10 years, and there is a reason for that. But I had to go and wanted to go for my Grandmother's memorial who passed almost two years ago. That was really beautiful and special, it was on the ocean shore that we had her memorial!!!

    But seeing my mother was so difficult, I ended up leaving and staying in a hotel that last week we were there. It was a better visit than I normally have with her, however still not good. I did learn a lot about my family and my mother and what they have all been through growing up, and it gave me a better understanding of why my mother suffers from PTSD. She can also be abusive as well, it is a cycle that I feel I have broken, and my son agrees!!!!!!!!!!! But my mother was abused, and therefore she acts abusive when she is stressed or sad or whatever.

    But mommasita, I feel what you are saying and I feel guilt as well. But you have to look out for yourself and your family. I understand totally what you are going through. My mother is in BC alone, and I feel guilty for that. When she moved there when I was 16 I literally ran away so I would not have to go with her because she was putting herself smack in the middle of dysfunction and abuse at its best. That is why she suffers from PTSD. So don't feel guilty, my life would have been so different had I moved with her!!
    I love my mother and feel sorry for her, but you can't let it rule your life.

    I did so much for my mom when I was out there, bought her groceries, did errands, took her everywhere she needed to go, ran myself ragged, no time for vacation stuff, just doing things for her. Which I didn't mind, they needed to be done. But came back in a huge fatigue flair that has taken me two months to come out of. And one day she says to me, I am trying to control her life and "eff" it up, because I don't like her bf!! Really, Really, Really?????????!!!!!!!!!!!!!!!! Spending so much money to go and see her after 10 years, airfare, car rental, hotel room, etc, dinners out, everything, and that is what I get???!!!!!!! OMG It is sad, as a result, my son doesn't like his grandma, there was no bonding time with him, he just refereed our fights and hid out in the bedroom. DOesn't like her, doesn't respect her, it's sad really.

    And I have finally started counselling for myself for things I should have went for when I was a child and I feel this will be the start of getting my life back!!!!!!!!!!!!!!!! I am so happy, it will be a journey that is for sure, but the end will be worth it!

    I just started a 90 day challenge and challenged myself to lose 40 lbs!! I am son my way, which is awesome and am so excited about it. Starting to get my energy back and feel good. :goodvibes It is Body by Vi and it is doing wonders for me, especially on the days that I have no energy I make a shake and I have my meal. That is a lot of the reason I have gained so much weight, if i am not feeling well I do not eat ALL DAY sometimes not until 9 at night!! Which is not good for my body. So this way, I can get my vitamins and nutrients in and it is working!!!!!!!!!!!!!!!!!!!!!!! I'm getting my sexy back LOL
    If anyone wants more info on this PM me, I feel it has truly helped me.

    I have not read all the back posts that would take quite a while!! But I see we have new people here!! YAY!!!!!!!!!!!!

    Hopefully I will be here more often.
     
  6. tiggspring

    tiggspring DIS Veteran: When I stop talking you'll know I'm d

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    Bright its soo good to see you! Just a quick post to say hello. Hope eveyone is doing well. Lots to tell so will catch up later.
     
  7. mommasita

    mommasita DIS VETERAN Moderator

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    Hi Brighteyes. Thank you for the words. I know what you mean about your mother too well..

    Good for you on the shakes. My best friend lost 32 pounds with that exact shake. She is now trying to get me. I just need a little better budget for them. They do work though, she looks FAB.....

    In the middle of changing 2 bedrooms here. Ours and DD. Painted all Friday, and boy is it a LOT of work. It's all or nothing for me. I am saying this time next week, I can SLEEP :)
    :grouphug: to all......
     
  8. brighteyes

    brighteyes DIS Veteran

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    Thanks Tigg, so good to see u too, My summer was crazy busy with meeting with the ex all the time so he could get to know DS a little bit. And the wonderful "vacay" I had with my mom. LOL
     
  9. sduck

    sduck Mouseketeer

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    Education is very important. While some products may work for others my wife had a friend who was a distributor for Body by Vi. She thought it would help her since she has Fibro.

    After becoming very ill we found this informative breakdown. Again, the product may work for some but we had a very different experience. Please do not take this post personal it is just for education for everyone on the thread.

    http://www.davidmodderman.com/blog/index.php/weight-loss/body-by-vi-is-it-all-hype/
     
  10. brighteyes

    brighteyes DIS Veteran

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    I totally agree with what you are saying. I am by no means saying that this has cured my fibro at all. I still have pain just like I always did. However, having just come out of my fatigue cycle, I feel better than I normally do when I am not so exhausted. If that makes any sense. So by no means would I ever say that. I am just saying now that I am not fatigued right now, I feel better than I usually do. So for me, that is really good! And my mood seems better, I am not sure really why though.

    I had a promoter contact me and tell me she has fibro and chronic fatigue and after 4 weeks her symptoms disappeared. I told her, "Good for you, but mine haven't." I know fibro is different for everyone and not everything works for everyone the same way. I just feel the reason it is good for me, is that when I am in a lot of pain, or an extreme fatigue cycle, I tend not to eat at all, which is not good for my weight or my energy levels, so for me, when this happens, I can whip up a nutritous shake.

    And if I feel a little better then maybe I will feel like exercising again and feel even better. Just trying to tell you guys how it helped me, it may or may not work for others.
     
  11. brighteyes

    brighteyes DIS Veteran

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    Thanks,

    I will keep going with this cause it seems to be working for me and am feeling better bit by bit :)

    I hope if you try it, then you can at least feel a little better too. :goodvibes
     
  12. tiggspring

    tiggspring DIS Veteran: When I stop talking you'll know I'm d

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    This soooo true! :thumbsup2 Fibro, CFIDS and ME are such crazy illnesses that even in the same person what worked a week ago may not work today:(. Meds do not work for me but for many here they do. I have had some reactions to some pretty tame stuff like coQ10:confused3 so I never take any suppliment without my DH around.

    Personally I think the reason there is such variation in seriousness of these illnesses is beacuase they are caused by a variety of things that mimic each other. Those of us with long term serious illnesses I think have biochemical issues like undiagnosed thyroid, Lyme or some unknow virus like xmrv. So we need to keep trying dfferent things until we hit on our issue


    Glad you are feeling better:goodvibes. It has been such a long hard year for you:hug:
     
  13. tiggspring

    tiggspring DIS Veteran: When I stop talking you'll know I'm d

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    Well I finnaly had a good all around week.:cool1: last week didnt end well though.
    Last weekend I went to girl scout camp and fought migraines all weekend and gained 3 more lbs:scared1: With DD7 WDW dance I was 26 lbs more than I weighed last summer and now way to buy shorts now!

    Monday I once again started my low carb diet that I have tried to lose weight with since Aug but the fibro just fought me. I added to my sassy water routine and very low carb diet Rasberry keytones and green coffee bean extract that I saw on Dr Oz. I had tried them without diet two weeks ago because I heard you could lose two lbs per week with no change in diet...that didnt work for me. Well diet and pills and I lost 11lbs in 6 days!!!!!!:cool1::cool1::cool1:. Now I realize much of this was water retention but who wants to carry that much fluid around. I will let you guys know how it goes. I start the day with grapefruit and eggs and I have not felt any carb craving which is cool. I also have had some really good Fibro days. Now that could be the weather, a cycle or a fluke.....hoping it all continues though. HAving one drink a night,something that helped me sleep on the cruise, contines to help me sleep so mmmm I'm still drinking those martinis:rotfl:

    For those of you new to the fibro game and still trying to rule out other causes and for those who keep trying to adress issue I have another thing we all might all try. Type 2 hypothyrodism. Basicaly you make anough thyroid hormone but your body becomes resistant to it similer to insulin resistance. Here is an article on it http://www.21centurymed.com/?page_id=12. I read about it in First magazine. Now this is not maintream medicine so it looks like if you are interested you might need to talk to a naturalpath dr. If I cant get treated for lyme or treatment doesnt work this may be my next step since both my aunts and an unlce all had thyroid issues 3 out of four siblings is a significant family history in my opinion.

    On the lyme frount I think I am a bit closer to a lyme literate Dr. My DH has gone through a battery of tests and a new lyme titer. test were fine but titer was high 2.89 when normal is lower than .98. He is back on antibiotics and was told iv antibiotics might be in his future if test came back high this time. Lyme has giving him a glimpse into my world. On a very positive note one test given to my DH was a stress test/ echocardiogram combo. DH's dad died at 42 from a haeart attack his dads father died about the same age from falling off the roof which we think might have been a heart attack and DH is quite overweight and off course stressed to the max the past few years. A heart attack has worried me a great deal. Well his echocardiogram was PERFECT:cool1::cool1::cool1:. I see many more crazy rollercoaster rides in my DH future. Now I wont hold my breath every time he get on with DS.

    Well thats just some of whats been going on. hopefully I can post more if I keep feeling well.

    Sending pain free vibes:goodvibes and pixie dust to allpixiedust:
     
  14. tiggspring

    tiggspring DIS Veteran: When I stop talking you'll know I'm d

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    Quick update. Last night I noticed a slight rash on my chest, couple doz eraser size red spots and I feel like I'm getting a uti. I have had these symptoms before just never together. Going off rasberry keytones and green coffee bean extract in case I'm having a reaction. I lean towards the rasberry keytone since I smell like resberries lol. I really do no kidding ;).
     
  15. mommasita

    mommasita DIS VETERAN Moderator

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    Glad to hear you happy with your weight loss..:cheer2: Good job..

    I fluctuate. I lost 70 pounds about 2 years ago, for NO reason. NONE at all. Now I was super happy, but everyuone asking me what I did, give them my tricks.. I slowly thought ok, this can't be normal. My dr did a battery of testing, and nothing was different. I have AWFUL eating habits, and I haven't changed those. I turned 40, and it happeend. Then all my brain surgeries and spine ones happened. There I lost a TON, because I was unable to walk or move an inch for weeks, and I got quite depressed, and then just didn't want to it. NOw I gain 5, next week it is gone. SO I guess I am at my weight level, who knows.

    Well, I am UP because we just had an earthquake.. 4.5 but I was sitting here and it sounded like an 18wheeler was going right at my house. Everyone else sleeping and NOBODY heard it.. Opened the front door and all the neighbors were out worried. The center is 9 miles from us, so maybe we felt it a little more due to that. I had some things fly off a shelf... Nothing major, but hard to go back to sleep..LOL

    Well just checking in and probably rambling from my nerves..

    XO everyone
     
  16. tiggspring

    tiggspring DIS Veteran: When I stop talking you'll know I'm d

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    How is everyone doing after this storm? I been on a total roller coaster ride!
     
  17. mommasita

    mommasita DIS VETERAN Moderator

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    I keep thinking of everyone, and wishing I could do something to help more than donate.

    I am glued to the TV 24/7

    Last week I had a 2 day assessment and am waiting on news to go further.

    :hug:to everyone
     
  18. scojos

    scojos <font color=peach>I want to be Tinkerbell and fly

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    the hurricane was all over the news here in the UK, my friend is in wdw with her asd id, she says its ok there, some im just glad she is safe. hope all my american friends have water /heat/food and are safe.... its it funny how it comes down to the basics??
    well this brit has been having a pretty poor time of it, i saw a pain consultant who just keep going on that it was my own fault as i was fat and eat the wrong things.... (i weigh 200lbs for 5 6 and have a masters in food and nutrition!!) i ended up screaming abuse at him and walking out (which i have never done in my entire life!)
    the cold here is kicking in, which obviously isnt helping and my kids have had a week off school which has knocked me about too...
    so at 5am unable to sleep due to pain i come and hang on the dis lol!!!

    everyone stay safe and pain free
    Tracy
     
  19. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone. Checking in.

    Fibro has been bad; I've been sleeping an average of 16 hours in a 24 hour period. Pain hasn't been horrible but the fatigu is overwhelming.

    I found out that all Federal unemployment is ending at the end of December so I've been stressing about that and really trying hard(er) to find a job. I have an interview next Tuesday. This may be a good fit for someone like me. It's an answering service operator position. Casual dress, it's a sit-down job, it's fairly local, and the hours are sort of what I was looking for. The negatives are that I think it might be a higher stress level type of job (from how it was explained to me today over the phone by the owner of the company), and the pay isn't good at all. Training takes at least a month and it pays minimum wage. After the training period, the salary will be 1/3 less than what I was making at my last job.

    However, once unemployment runs out, ANY job and income will be a plus. If it turns out that I can't work due to fibro, rheumatoid arthritis, etc, then at least I will have given myself a chance. My last job was very fibro-friendly.

    I'm kind of nervous at the thought of a new situation(job) but I'm kind of looking forward to it a little, too.

    Sorry if I'm rambling here.


    We did get hit by the effects of the hurricane. We were without power for 2 days and our house got damaged by the cables pulling off part of the facia board on the corner of the house where it meets the roof. We have to call out a carpenter and an electrician to give us estimates on the repairs.

    I have family who live near the Jersey shore and they are still without power. Fortunately though, they're all safe and their homes have minor damage. It's heartbreaking to see the pictures of video of my former home town and the place that holds so many memories for me and my family. I have to believe that they will rebuild and restore.

    mommasita: I'm glad that you're ok from the earthquake. Some towns near me, all the way down here south of Boston, felt the effects, so I can't imagine how it was for you, being so close.

    tigg: How is your rash? How did you make out with the hurricane???

    tracy: I'm sorry that your doctor spoke to you like that. I hate when doctors try to blame everything on weight!!! :mad: I hope you can find someone with more knowledge and more compassion to help you.


    HUGS to everyone. :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:
     
  20. mommasita

    mommasita DIS VETERAN Moderator

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    Glad to hear from you SeaSpray, I was thinking of you sooo much...

    Good luck with the interview.
    Sorry you have been in so much pain. Personally, the changing of the seasons is hard for me. This time of year is the PITS...

    scojos: Agree with SS. I have had so many :stir: battles a few years back. It is frustrating, and sometimes they do need to be put in their place. There are boundaries IMHO.. Sorry you have been having a tough time lately.

    Tigg: how are you and the rash?

    Gentle hugs everyone
     
  21. scojos

    scojos <font color=peach>I want to be Tinkerbell and fly

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    glad everyone is safe, we saw some horrendous footage here in the UK, and after experiencing TS faye at wdw in 2008...sort of get it (tho faye was nothing compared to a hurricane...as a brit i had enevr experienced extreme weather like that iyswim.....

    good luck with your job interview, hope it works out for you.

    Tiggs, i love the smell of raspberrys tho when i read this all i could think of was lotso and the strawberry bear lmao:lmao:... good job ur all disney nuts or you wouldnt get that refernce at all :rotfl2:... hope you re feeling better now :cloud9:

    i start my fm awareness course tomorrow (with the same physio who was there when i told the dr he was "not nice";);)... looking forward to seeing her face when i turn up, i have filled in the complaint form just going to leave it a few days, so i can re read it and send it (i always do that with paper work, means i can check things more rationally...:rolleyes1

    gentle disney hugs to all
    Tracy xx
     

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