Fibromyalgia Thread

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

  1. tiggspring

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

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    I know several of our Fibro friends are in the Massachusetts area I think on the Boston side. Hoping all is well with you this am and that the chaos in Boston is not affecting your community.


    ((((HUGS)))) to anyone in the Boston area during this manhunt.
     
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  3. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone. Just want to say that im ok here south of boston. Scary stuff though. Im in my car outside of my doctors office right now. Been a crazy few weeks. Seems to be leveling off now. Its always something though isnt it. Lol. I will write more later. Hugs to all.
     
  4. mommasita

    mommasita DIS VETERAN Moderator

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    SeaSpray: So happy to hear that you are all safe..

    Tigg: Hope you feel better.

    I contemplated not posting, but I will.

    I am just doing horrendous. Ready to almost give up..
    My head is healing fine, thank goodness.. My shoulder is not healing, I NEVER sleep.. I saw my Dr again, and did more xrays. He prescripted Tramacet, and I had the worst reaction.. Home alone, dizzy, sweating, nauseous.. I ended up taking off all my clothes, lying on the bathroom floor with a cloth on my head.. I had a stupid appt with pysio, and drove there somehow... Called the Pharmacy, and my Dr faxed in Lyrica? I have taken this, it does nothing.. Pysio act like I am crazy, and how could this happen.. I have lost almost 15 pds now, I am too sore or couldn't care a fig about eating.. I look like a zombie with giant bags. Can't even wash my hair..:guilty:

    I am just fed up, fed up, fed up.. Seems like everyone around me is too.. My Dr thinks that because I am missing C1 and C2, and 1/2 of C3, that it may be coming from my spine. I may do an MRI for this.. Until then, I am absolutely in agony..

    So sorry to complain. I just had to let it out..


    Hugs everyone.:grouphug:
     
  5. brighteyes

    brighteyes DIS Veteran

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    Mommasita, I am glad your head is healing but sorry to hear about your shoulder. I feel your pain. I mean I really do, I suffered with mine for years thinking it was fibro It is very painful I know. I have bursitis in one shoulder and the other is calcific tendonitis.
    When mine flares I try not to use it , well you cant cause it's so painful but I just try to do gentle stretching everyday to keep it from freezing and am very careful what I do> Hope you get some relief soon for your shoulder.

    Seaspray,

    Thanks for the words about my son. He is doing better trying to get into an outpatient program at the hospital, and we are in family counselling to help us figure out how to work through this together. It is very scary, day by day. I am seeing an improvement in him though. He has been seeking out contact with his friends and I am seeing a positive change. I just hope it lasts. It is just so hard seeing our loved ones go through such pain. Congrats on your 25 year old, ha ha! Mine is 17 already!! How is your son doing lately?

    Wowza! You have sooo much going on too. What the heck is in the water lately?? I am glad you heard from your son. Glad you are getting some rest. i hope things start to calm down for you soon.

    Welcome to the fibro board. This is a wonderful, supportive and encouraging place. We are here to listen, so vent away and share away. :grouphug:

    Pixie dust to you all that we all start getting some relief soon.
     
  6. brighteyes

    brighteyes DIS Veteran

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    So it sounds like everyone is going through a lot right now. I hope it gets better soon for everyone.

    I am happy to update that after having hives ---- let me rephrase that ---- after almost every inch of my skin and scalp being swollen and inflammed and very painful, for almost five months I AM HIVE FREE!!! :yay::yay: Well 99.99 % anyways. :dance3:

    I have been going to a naturopath and am off ALL my meds, but what was causing the problem is food. So she took me off all wheat/gluten, dairy and eggs. I am on a very strict hypoallergenic diet. She said this will also help with the fibro.

    She said my body has been so inflamed for so many years and the food intolerances have just pushed my body to the breaking point. I thought I would miss the wheat cause I love my bread but I really am mourning the loss of dairy. :sad1: But it is worth it cause I feel better. I still have fibro so it was not a food allergy. But I feel healthier if that makes sense.

    So I guess I am almost like a vegan except I eat chicken LOL But I am feeling better and just so glad my skin is back to normal. :)

    Wishing you all better days ahead. And pixie dust all around for everyone!

    Stephanie
     
  7. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone :wave2:

    I should be at work right now but didn't make it out the front door because my IBS is flaring up badly right now, and I can't be far from a bathroom. Sorry if that's TMI. :worried:

    Physically I'm feeling ok, from the prednisone and plaquenil, I assume. I'm still extremely exhausted all the time, and it's really starting to effect my mind now. I see a psychologist for PTSD (from something that happened a few years ago) and he recently said that he thinks I am depressed right now. I think he might be right. But I'll be ok. I think it's just a lot of things right now contributing to these feelings. But fortunately, nothing really bad; just part of getting older, I guess.


    Oh you poor thing :( :hug: Lack of sleep is one of the worst things. In fact, lack of sleep has a worse impact on a person's health and ability to function normally than over-drinking does.

    And all of the pain you're in. That's enough to bring someone really down. :( Chronic pain.... the inability to get away from it. Please know that we care about you and understand. :hugs: I wish that there was something that I could do to help you. Please let me know if there is anything I can do for you. :hug:

    It's been a long road. I wish we would've known about his issues when he was 17 and gotten help for him back then. The magnitude of his problems weren't apparent until he was around 20 years old. It's been a roller coaster, with the worst time in 2009. But I found a wonderful psychologist who has helped him tremendously. That, along with a month at a wonderful in-patient program located on Cape Cod (Massachusetts), and my DH and I learning so much about his problems, he has come such a long way. He is on disability. When he was in the in-patient program they advised him that he would probably qualify for disability, so when he came home I drove him over to our local Social Security office. Within 2 months he was deemed disabled (and according to them, they considerd him to have been disabled for the prior 3 years as well).

    Anyway, I'm telling you all of that because now, just these last 2 weeks, he has gotten a job. It's a fairly big accomplishment for him. He found the job on his own, went to the interviews, was hired, and has gone to work every day that he is scheduled for, and he's doing fine. He doesn't have an intellectual disability, in fact he is quite brilliant; his issues are severe social anxiety, major depressive disorder, etc. I'm very proud of him because I know how difficult it has been for him for many, many years.

    I'm sorry to ramble. I'm glad that you're seeing some improvement with your son. :hug:





    :welcome: My DH takes gabapentin for diabetic neuropathy and it seems to relieve some of his pain. I hope it can help you. :)

    I'm glad you're feeling better! I bet that a lot of us are effected by foods that we aren't aware of.

    I think I'd go nuts with hives all over! I'm getting itchy right now just thinking about it. LOL
     
  8. brighteyes

    brighteyes DIS Veteran

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    Yeah, it was way worse than having fibro that`s for sure. I've caved a few times and had some cheese or dairy product and it was not pretty so I'm not missing it so bad anymore. :scared1:

    Pixie dust to all :cheer2:
     
  9. carrie6466

    carrie6466 DIS Veteran

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    Thanks for all the kind thoughts :) It's been a long month. I'm feeling quite a bit better now, than I did in the beginning. I had bilateral mastectomy with sentinal node biopsy, so I had 3 lymph nodes removed as well (all 3 were clean) .

    I've been back to see the general surgeon twice, I've seen the plastic surgeon 3x a week for the past 3 weeks, I've seen the oncologist, and I've seen my family doctor. Next week I have to get yet more bloodwork, ct scans of abdoment/pelvis/chest (checking to make sure nothing else brewing). The following week I go back to the neurologist and the endocrinologist. And the week after, more bloodwork and a visit to the cardiologist.

    My month is effectively booked. I'm exhausted just reading it.

    Since the surgery, my doctor has told me I now have diabetes. I never had blood sugar in my life even one point over normal. I asked him if this could be stress and trauma from the surgery. He thinks perhaps. Put me on meds for now, I'll go to an endocrinologist in 2 weeks for a more thorough workout.

    I hope everyone is feeling ok and we can all just keep hoping for good painless days. I actually feel a bit more like my old self for the past few days, which has been a pretty good feeling.
     
  10. mommasita

    mommasita DIS VETERAN Moderator

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    Carrie: SO happy you checked in, and are feeling somewhat like your old self.. Been thinking about you :grouphug:

    Brighteyes: that sounds downright miserable :headache: HOping you are feeling better.. My daughter who is 14, is Vegan.. Hard on me, but she is doing really well, and no more stomach issues.:hug:

    Seaspray: Agh.. How is the IBS now? So sorry I have been MIA.:hug:

    TIgg: HOpe you are ok :hug:

    Well, my Xray was misdiagnosed.. My dr was on vacation for 2 weeks, the radiologist read it as "clear", and my Dr read a torn rotator cuff :rolleyes:.. So I am going Monday for an Ultrasound, followed my an MRI, and then we will see. I am told to not do much.. HELLO, it has been weeks that I Suffer..:rolleyes:

    Gorgeous weather here, and my DH is on vacation this week.:headache: I swear I love the man, but I hope we are NEVER home together permanently. He has decided to do renovations, open the pool, and paint..ALL AT THE SAME TIME :upsidedow..

    Hugs to everyone. I am sorry I haven't posted much. My pills just knock me out. But, I am thinking of you all.:grouphug: And hope I didn't miss anyone.
     
  11. mommasita

    mommasita DIS VETERAN Moderator

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    :eek: My Cuff is completely torn..

    I had my U/S and the Dr doing it explained a bit, but this report will get to my D in about 3-4 days.. She said it was badly torn, I have chronic bursistis, calcium deposits, and other things I don't understand.
     
  12. rosanab1031

    rosanab1031 Mouseketeer

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    I can't tell you how happy I am to have found this thread! People who literally know my pain! YAY!!!

    I am 25 and was diagnosed with fibromyalgia at the age of 22 but we think I have had it since I was in high school. When I went in for my first rheumatoligst visit I had EVERY tender point. Lucky me. I was falling asleep everywhere I went and I felt so lazy and useless. I decided that at 22 this couldn't be the rest of my life.

    I played around with medications for a bit but they honestly just made me so tired I couldn't function in the mornings and my work day starts at 7:20AM so I went off the meds and tried to find more natural ways to help my fibro symptoms.

    Massage was great but so expensive. So I looked into chiropractic. I absolutely love my chiropractor and we connect really well bc she is a Disney freak like me! Yay! I go once a month bc that is what I can afford, but I should really be going once a week.

    I also do acupuncture once a week and trigger point injections once a month. The injections hurt like HELL!!! But I am finally feeling relief! My shoulders actually "squish" now when before they just felt like rocks!

    I try to stretch out every night. I really need to get back into doing yoga bc that was also very beneficial. When I started gaining weight I felt it. I have cut most fast food out of my diet and have been feeling much better! :)

    I also take a supplement called SAM-e. I have noticed a great difference since I started taking it about a month ago. It is supposed to help support nervous system health as well as a happy mood stimulator. I call them my happy pills :D

    So that's me! I am taking my FIRST trip to WDW this June. I use a cane to help me get around the parks and try to take as little ibuprofen and my liquid hydrocodone as I can.

    The weather here in CA has been so unpredictable lately that my body can't keep up :/ I have been dragging so bad in the morning but at least made it to work :) The stress of my job doesn't help but all I have to do is remember I will be at WDW in 23 days! :D
     
  13. rosanab1031

    rosanab1031 Mouseketeer

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    OMG So sorry to hear about all of this :( I hope you start to feel better soon. Will you have to get surgeries?
     
  14. mommasita

    mommasita DIS VETERAN Moderator

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    :welcome:
    Sorry to hear about it so young....For me, a good Dr is key. My Rheumy is just about a lifesaver, and understands me..

    The weather here is totally upside down as well. Swimming last week, snow this past Sunday :furious:

    I am waiting news from the Othropedic, thanks for asking:goodvibes
     
  15. brighteyes

    brighteyes DIS Veteran

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    To TIGG:

    [COLOR="Purple"[SIZE="7"]HAPPY BIRTHDAY to YOU':cake::cake::cake:[/SIZE][/COLOR]

    Hope you have a wonderful and pain free day! :goodvibes:goodvibespixiedust:pixiedust:pixiedust:
     
  16. rosanab1031

    rosanab1031 Mouseketeer

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    Thanks for the lovely welcome :) Yeah my Rheumy is great too. He is the only reason I stay with Kaiser. My primary physician can never seem to remember that I have fibromyalgia :/ Great support system there! Lol.

    Hope things go well for you! :goodvibes
     
  17. mommasita

    mommasita DIS VETERAN Moderator

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    Happy Birthday Tigg:woohoo::hug:
     
  18. tiggspring

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

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    THANKS GUYS FOR THE B-DAY WISHES:lovestruc:love: Luv you guys!

    Bright it is soo nice to see you getting back here more! Now I gotta get back on track.

    Rosan WELCOME!:welcome:

    I too got FMS fairly young 27. Not that there is a good time to get it.

    If you have time I would highly recommend using a touring plan like Ridemax so you can avoid a crash by pacing yourself. Ridmax saved me a lot of time in line and a ton of walking. If you are not familiar with WDW the property is almost the size of my old home state of Rhode Island. Its HUGE something newbies cant possibly imagine. I found that using the train to get to the back of the MK and do just that 1/2 half of the park one day and taking second day for front of park and using train around Dumbo to get back to front worked well. I also have found that eating my big meal for lunch and doing two shows like Phylharmagic and laugh factory on either side of lunch gave me 2+ hrs in middle of day to rest in A/C. Almost as good as going back to room without the wasted time. The park I found hardest to manage was the Studios. It seems much more crowded and Hot. Even my healthy kids say that. If you have heat intolerance you might want to bring neck coolers. you can find them at Walmart in camping section. when you wet them the gel inside swells us and keeps your neck cool for up to an hr. Just some thoughts everyone here has had to use different methods to deal with the parks.

    I'm soooo sorry! :hug:How are you feeling now? Any better?

    Carrie, you are such a trooper! You have been hit with soooo much lately and you keep moving forward. That takes such courage. Hope you are doing well with the deluge of Dr apointments.

    Seaspray, Sorry about the IBS. Its about the only thing I don't have:upsidedow but I understand it is PAINFUL! What great news about your son! HAving worked with challenged kids before I got sick I know what a big accomplishment it is for him. Even if its just short term it would be a good start. Hopefully it will be clear sailing once he gets the chance to get into the work world..

    Sorry it has been so long since I've been around. Combo of crazy busy with kids, computer issues and Fibro. The migraines finally calmed down around day 51. Mostly I've been good but the increase in kids activities especially DD8 dance competitions. Just two but OMG my fibro does not like changes in schedules. I've stopped talking to friends, family and posting but I am getting to scouts, soccer and dance which is a major accomplishment.

    DH is doing MUCH BETTER with his Lyme induced FMS. It has cost of thousands OOP and he is expected to be on antibiotics for 6 more months but he is BETTER:cool1: He is convinced this is how I need to go but we don't have the cash. I do need to take care of myself though. I have a growth on my tong that was checked but now growing and I have jaw pain constantly, I gained another 20lbs with last migraine run so that 40lbs since last May :sad: I haven't been to a gyn in 4yrs and I really need a breast reduction for my migraines. another thing I have put off since my DH started his Phd 4 yrs ago. Basically I need to put myself first occasionally. My kids seem to be settling down some and thank god my youngest is the easiest of the bunch so I'm hoping to get them to help me get house together and start using my energy to exercise. Here's hoping it works.

    Well that's my update.

    Sending Pain free vibes:goodvibes and pixie dust to allpixiedust:
     
  19. rosanab1031

    rosanab1031 Mouseketeer

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    Thank you Tigg! You really do need to put yourself first sometimes and believe me I know its hard! But the better you take care of yourself the more you are actually able to do for others :) Kinda weird how it works out that way.

    Thanks for the recommendations! I will definetly be checking into that Ride Max :)
     
  20. tiggspring

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

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    What I like about it is if you play with the order of things you can see how the time really change. For example when we went in 2009 the old Dumbo ride took forever to load. If it was the first ride you got on after rope drop your wait 5 min or less if you got there 15 min later is was 40min+! Ridemax will tell you min walk, min wait and ride min so you can really pace yourself.
     
  21. rosanab1031

    rosanab1031 Mouseketeer

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    Thank you so much Tigg! AH! :worship: This is the BEST planning tool I have found yet! I love Ride Max! I hope that it executes as well as it plans! It looks like it will really help us manange our time if it works! :)
     

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