Fibromyalgia Thread

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

  1. babydoll65

    babydoll65 please stand clear of the doors, por favor manteng

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    I'll be traveling with my 70 year old mother. If rented a scooter for her due to knee replacement surgery and most recent back surgery. She has also had fibromyalgia for about three years which she takes medication for but does not always work. Her major complaint is both arms and shoulders which leaves her not being able to raise them up too far so not sure if the scooters have adjustable hand grips. What I need to ask is whould she be able to have a gac or not. We never got one for her when she had her two surgerys but with her fibromyalgia not even sure if the scooter is going to be a problem.
     
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  3. rosanab1031

    rosanab1031 Mouseketeer

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    Sorry you have had a bad week. Hope your next one will be better! :grouphug:

    This first month back to work has been awful! So stressful. We have a new director who is in WAY over her head and is trying to change things "for the better" but she is just pissing everybody off. UGH!!!

    My anxiety has gotten worse and I have actually been having anxiety attacks. No fun! Decided I needed a personal day on Monday and went to Disneyland. It was my first time back since January and we had so much fun even though the heat was INSANE!!! But unfortunately even the magic of Disney was not enough to overpower the madness that has become work :sad1:

    Hope everyone has a wonderful weekend! Much love and many gentle hugs!
     
  4. rosanab1031

    rosanab1031 Mouseketeer

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    Always nice starting the week off getting yelled out because I don't look disabled. Seriously. I had a woman yell at me for parking in a handicap spot while I was picking up my lunch even though I have handicap plates. :furious:

    It made me so mad! She was actually yelling at me for NOT looking handicapped! I came up with some very snippy remarks in my head but of course could not use the as you never know who knows who in a district so in the most neutral voice I could muster I told her it really wasn't any of her business but I had plates in my name and told her she should look up invisible disabilities. She of course rolled her eyes at this and just kept yelling that I didn't look handicapped. Really wanted to hit her car with my cane but considering it was an $80 custom cut one, didn't really want to waste it on her. Lol.

    BTW, who in their right mind would spend that much on a cane if they didn't need it. I never would have looked twice at them. Lol. But its beautiful and you can tell it's custom. Didn't use it to pick up my lunch but still. Lol.

    Okay... I think my vent is over. Thanks ladies! Lol. :rotfl:

    Much love and many painfree hugs to all! :grouphug:
     
  5. mommasita

    mommasita DIS VETERAN Moderator

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    People can be so ignorant.. I'm sorry that happened to you.. You can't change those who have these preconceived notions.. Good for you for speaking up..

    Hoping for some easier days :hug:
     
  6. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone.

    I'm still having a rough time, all around. I'm thinking about all of you and hope you're all doing ok. :grouphug:
     
  7. onnawufei

    onnawufei The Girl With the Ninja Turtle Tattoo

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    Hi all! I think this is the third year in a row that I've introduced myself, because I have no attention span and forget to come by this way. Sorry! :rolleyes1

    I have fibro and something is going on with my knees that I can't say I'm a fan of. I know I'm getting arthritis in one and it hurts like crazy so I have to wear a brace whenever I do a lot of moving around. I'm going to the doctor on Friday for a follow up on that knee and so he can look at the other one. It doesn't hurt right now, but I have a feeling it's getting arthritis too. Otherwise I suppose it'd feel left out.

    Every year before our Disney trip I start to worry that my fibro is going to get in the way and stop us from having fun. It never really does, it only tweaks things a little. The worst that's happened so far is last year I woke up in so much pain I didn't think I could even move without crying. But after taking some meds, laying on my acupressure mat and taking a nap I felt a lot better. This year I'm definitely worried about the knee(s?) though.

    At least my brace is kind of cool looking. :laughing:
     
  8. mommasita

    mommasita DIS VETERAN Moderator

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    HI!! I forget EVERYTHING.. No worries here, I think we all have this memory fog..

    I hear you on the arthritis, it sucks, and before every vacation I worry as well. I am not sure what it is, maybe the heat? But I seem to feel better away..

    That mat sounds neat? How does it work..


    SeaSPray and everyone :grouphug:

    I see my Dr Monday, and am anxious. FINALLY see a surgeon Oct 17 for my torn rotator cuff, and I am almost sure the other side is gone.:scared: My Rheumy on Monday I am looking forward as I mentioned.. Lately my legs just give out? I walk, and they like bend and lock.. Hard to explain.. My left side is actually bruised all the way down, and I wonder if it is at all possible that the locking caused it? I dunno.. I shall ask..

    Having the same issues with my Mother, but told my stepfather I would not let her die at home this way.. I am going to get involved and do something, I love her enough to care..'
    Well, off to bed.. hugs all:grouphug:
     
  9. dawnball

    dawnball <font color=red>bouncie bouncie...<br><font color=

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    I thought I'd poke my head in here and ask for some advice.

    Early this summer, my doctor diagnosed me with fibromyalgia. We've spent a year working on the symptoms, and I'm generally in what seems like the "sweet spot" of symptoms vs side effects.

    For the last week or so, I've been having sleep problems, first problems falling asleep, but now mostly frequent and extended night wakings. My muscle pain and the tingle/fuzzy sensation that I call "noise on the lines" has been worse lately, and I think that's waking me up, then broken sleep makes the neuro symptoms worse. I've tried sedating antihistamines (prescription and non) with minimal effect. Ambien leaves me more out of things the next day than lack of sleep.

    I'm pretty sure that I just need to break the self-reinforcing cycle, and then my usual routines will work again. In the past, I've used xanax or percocet for this, but xanax doesn't mix well with the antidepressant that controls the "noise" and percocet makes my GI symptoms worse.

    Any suggestions for better alternatives?
     
  10. mommasita

    mommasita DIS VETERAN Moderator

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    HI.. I can relate to those symptoms soooo well.. Sorry to hear.. I take ativan every here and there. I would make an appointment with my Dr to discuss what may work best for you?

    :hug:
     
  11. dawnball

    dawnball <font color=red>bouncie bouncie...<br><font color=

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    Yeah, there will be a doctor involved if I need a prescription. She's the one who's prescribed my giant lego box of pills, and suggested I try ambien. I really find that I get more sustainable benefits from lifestyle changes, and she's not as good at that as she is at medicating symptoms.

    Typing that out has me wondering if the increase in symptoms has made me get less incidental exercise - I'm still going to my classes, but I might be walking and moving less without really thinking about it. It decreases pain in the short term, but means I tend to have more symptoms the next day...
     
  12. rosanab1031

    rosanab1031 Mouseketeer

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    Thanks Momma! :D I don't why I let it bother me so much. Probably cuz she wouldn't shut up about it! Lol.

    Sorry to hear SeaSpray :( Hope things start looking up real soon for ya! :grouphug:

    We forgive your fibro fog! Haha. Mine gets so bad when I'm stressed that I actually forget what day it is :eek: Lol! I added this thread to my subscriptions so I wouldn't forget about it like I have so many other threads. Lol.

    Anyway, welcome back! I had the same worry before my first trip to WDW this past summer. I just made sure to take my medication on time and drink enough water bc I am definitely not used to that insane weather. Although California is definitely catching up :/

    What is this accupressure mat you speak of? I may have to look into this :) I always go for more holisitc remedies like acupuncture and chiropractic before I go for my medicine cabinet. Just too many side effects for me. Mostly the falling on my face. Lol. Every medication I have ever taken makes me so tired!

    I totally understand thie leg thing! I used to have it when I was younger and I have learned that for me if I keep a somewhat soft bend it won't do it. But when I was in high school I definitely fell and took a few clothes racks with me :sad2:

    I know its hard to care when we have "difficult" family members to deal with. But kudos on you for not giving up :)

    So many doctors aren't nowadays :/ I think the walking and moving less is a rut we can definitely get stuck into. Because of the constant weather changes here in CA the last few weeks my joint pain has been flaring up so I haven't been very active. Well... I have put on 8 pounds! :scared1: NO BUENO!!! Gonna go swimming tonight and probably to a class tomorrow. Gotta get my butt back in shape! Lol!

    Hope everyone is having a good week so far! I had a crazy weekend so I'm still trying to catch up. Hard day at work yesterday just because I was so tired. But today is going better!

    Much love and many gentle hugs to all!:grouphug:
     
  13. mommasita

    mommasita DIS VETERAN Moderator

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    HI everyone..:grouphug: to all

    Last week I had a migraine for 4 days.. I went to the ER Friday for the first time for something like this... I was given 2 bags of some powerful cocktail, along with some liquids..

    I haven't mentioned this (I think), but the week before I had 2 very odd episodes, and I am almost shameful of them :(

    I was driving with a car full to my daughters' school for an event.. I stop at the light, pass the line a little, so I back up.. Well, I couldn't remember for the LIFE of me what gear to put it in.. I saw the N, the D, etc, and they meant nothing to me.. My cousin (beside me) said Sher, and placed it in drive.. I was so shaken up as all the cars were beeping, and I was lost.. The next day or the day after I went grocery shopping, put it away, started supper, and went to my daughter and said I was going grocery shopping, she opened the fridge and said I just went.. I had no recollection :guilty::guilty: I always have memory loss, but nothing this major..

    I was given a CT Scan, and they told me due to it (nothing more) I need to speed up my Neuro appt which is Oct 15th.. I am on a cancellation list, as he is away for a bit prior..

    I dunno anymore, but I am a little scared... It isn't like just walking into the room and wondering what i was in there for.. The car incident totally scares me..

    So all in all, a crappy time around here.. I have to tell my Dr about this on the 15th, and I am afraid to lose my license..

    During my last surgery, I had a significant bleed, and diagnosed permanent memory loss, but I want the explanation of it exactly.. To what extent? Is this going to progress?

    Well, I went on a little.. Gentle hugs to everyone, and hope everyone is doing as best as they can:grouphug::grouphug:
     
  14. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi mommasita, rosanab1031, tigger, dawnball, onnawufei, babydoll65, mfd25wife, and anyone else I may have missed. :grouphug:

    I'm so sorry to hear about all of the issues and health problems and other things that we're all dealing with. Lately all I hear from most people is negative, it seems that everyone is dealing with something these days.


    mommasita: Please don't feel ashamed of what happened; it had to have been so scary. :( I wish you could get in to the neurologist sooner just so you could find out what the CT scan showed.

    I'm still dealing with a new/old issue. One minute I'm ok and then the next I'm not. Fibro pain has been worse than usual lately, plus the RA pain. I've also had many nights of bad/broken sleep.

    Enough about me. I wish I could think clearly enough to reply to everyone separately. :( But I do think about everyone on this thread a lot and I'm hoping that everyone is doing as well as they can. :grouphug:

    I wish I could take away all of the physical, emotional, and mental pains that we all have. :sad1:

    I've been taking more anti-anxiety medication than usual, and I've been drinking in the evenings a few times a week, which is a lot for me since I don't usually drink often at all. Sometimes I just need a little break from thinking of the real world.

    Love to all of you. :grouphug:
     
  15. mommasita

    mommasita DIS VETERAN Moderator

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    You are so sweet SeaSpray.. I can't reply to all either.. I get too confused, and don't want to be rude..:hug:

    Sorry you are hurting so much... I find personally this is the worse time of year, the changing of seasons and the darn cold..

    Glad you are getting a little break.. IT helps take the edge off at times..

    :grouphug:
     
  16. rosanab1031

    rosanab1031 Mouseketeer

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    So sorry to hear all of this :(

    I totally feel ya on the migraine. I had one over the weekend and it is still lingering. Took some ibuprofen last night and turned off all the lights. It was so bad I was feeling nauseated! Drank a ginger beer to help with that and took some of my anti-vertigo pills :/

    It really stinks when doctors don't tell you everything. I kinda force mine too so I can do research when I get home :) I like being informed... and doing research. Lol.

    I hope on your next visit you are able to figure everything out :)

    Hi SeaSpray!!! :D

    Responding to the group does take a deal of concentration... which I do not always have. Lol. Seems to be the "norm" for all of us though. Lol. I tend to complete these multi quote posts at different times. Haha. Respond to one and then come back later and respond to the next :)

    It is definitely that time of the year :/ My muscles have been cramping up on me so bad. I will need to go refill my perscription for muscle relaxers pretty soon. Went to the jacuzzi last night. That helped some, but this time of the year just sucks! As far as pain goes. But at least there are holidays to look forward to right? Haha.

    Feel ya on the drinks too! I usually just "relax" on Fridays, but I have definitely been doing a lot more "relaxing" during the week too :blush:

    Agreed! Worst time of the year!!!

    Well as I mentioned I have been dealing with a horrible migraine. Work just seems to want to make things more difficult. Sometimes I just want to quit! The middle school is not accommodating at all!

    On the plus side I have an audition on Monday :D If it goes well maybe I won't have to worry about my current stressful work environment. Lol.

    Hope everyone has a better week!

    Much love and many gentle hugs to all! :grouphug:
     
  17. mommasita

    mommasita DIS VETERAN Moderator

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    rosanab1031.. So sorry about the migraine :faint:.. I hope it eases up..

    Break a leg (not really) On the audition.. Sending good vibes to you :woohoo:
     
  18. rosanab1031

    rosanab1031 Mouseketeer

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    Thanks Momma! Haha. I will try not to break my leg. Flats are the way to go! Haha!

    Migraine definitely eased up a little today :)
     
  19. pannm

    pannm Mouseketeer

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    Hello!!! I know that most of you (maybe all???) are adults dealing with Fibro. I didn't get to read through all of the posts to see if there were any parents with children suffering on here. My daughter was diagnosed with it about 2 weeks ago. She is 9. We are just starting the pain management and other medications.

    For the past 4 years, she has had nothing that has 'made sense' to any of her 5 Dr.s. She suffers from

    -Depression/severe anxiety, is on medication for it
    -IBS- she either has major constipation or the exact opposite (completely horrible diarreah), as I write this she's doing the 'clean out' that her G.I. Dr. has instructed us to do when ever she deals with constipation problems for longer than 1 week. She's been tested for EVERYTHING to do with G.I. and the only thing that came up was a 'severe IBS' issue. The Dr. was thinking it was going to be Chrone's.
    -PAIN...PAIN...MORE PAIN. I am at a loss for words. There are nights where she rolls into a ball and is in tears. The pain amounts, frequency, intensity and locations have only continued to get worse over the past year. In her legs, knees, neck, spine (it's the worst in her back/spine!), hips/sides...It started with her spine, new locations keep getting added monthly it seems.
    -Horrible sleeping patterns, always tired
    -body aches/feeling sick
    -Gets sick very easily, immune system is off and once she gets sick, she's sick for a LONG TIME
    -Gets dehydrated very easily and she's ALWAYS thirsty
    -MAJOR MIGRAINES!!!!! In fact, they'd gotten so bad that she'd actually throw up. They are 'manageable' with medicine, but she still gets bad episodes on occasion.
    -Food 'intolleraces'. She's been tested for all sorts of allergies, nothing came up positive- but because we spent about 6-8 months of 'diet restrictions and changes', we KNOW that she is extremely sensitive to dairy and corn products (corn, corn syrups). When ever she consumes anything dairy/lactose, she gets HORRIBLE stomach pains.

    Her current Dr.s treat the symptoms of everything. She see's all pediatric specialists: Neuro for the migraine control, G.I. for the digestive problems, Rheumotology for the body pains (just started with this DR.) a regular ped.s Dr. who she see's when we need to get in right away- because she's easy to get into. Also, infect. disease (which will pretty much stop now that we have a different diagnosis).

    For the last three years of Doctoring, we have been nothing but upset and frustrated. It took so long to get to this point! Our lives have completely been turned upside down. Everything we do has to go around whether or not our little girl feels well enough to even LEAVE THE HOUSE. There are days she refuses to even go to the store or go out for dinner. When she's having a bad episode, her and I don't leave the house for days.

    Now that we have a diagnosis...and when her meds get under control...Do any of you feel like it's controlled A LITTLE bit better? I know that there will always be 'bad days/weeks' but how about months?

    Because of her age, she cannot take a lot of the regular medications made for Fibro. they have to try different mixes of things (for all of her pain, anxiety, G.I.) What works for some, won't work for others. And some of the things she has taken in the past doesn't mix well with other things when it comes to meds. It is going to be a long process. Some days, I want to scream, cry and throw a fit. It's horrible to see your child to go through this and not be able to do much of anything.

    I read the tip on here to use a heating/massaging pad. I definately will be trying that today with her She's had massive pain in her back and hip areas.

    Any other helpful tips would be great. Tylenol does nothing for her pain, neither does ibuprophen. She may has well just eat a piece of candy.

    We've tried warm baths, cold packs, heating pads, those body ache patches, body cream/pain relieving rubs. Nothing seems to really do the trick.

    This past week has been very hard. We are a family that loves to get out and do things- trips to the beach, going to the zoo, going to DISNEY WORLD!!!, day trips around our area to explore.

    Since this illness and pain has started, her life has changed so much. She's happy less often, no energy and a lack of interest in things. When she was in second grade, she missed over 60% of the school year. The beg. of her 3rd grade year, we pulled her out and started to home school her by November 1st of the school year, because she'd missed 36 days of school and every day she was there, she was miserable and in pain. The school nurse said that she needed to 'toughen up, because most kids with migraine and pain issues can take a pill and go back to class 10 minutes later.' I was SO FURIOUS that I reported the nurse and three of my daughters pediatric specialist Dr.s (from the MAYO clinic in Rochester, MN) sent notes to the school district saying that my daughter was in a lot of pain, suffering from a health condition and that the nurses response was unacceptable. The nurse still works there, but I was told 'proper actions of discipline was taken'

    Since we've started home schooling, my daughters quality of life has been better. She has fewer migraines, less stress issues and she's happier. We are doing very well with her education. She's still involved with a lot of activities with other kids, when she's feeling up to it. We've even joined a home school group that meets once a week. We missed this week, because of her not feeling well.

    We moved over this summer, now living in the Southeast. New Dr.s, new methods of testing and new ideas. With in 1 month of them looking at her charts, previous history and talking to us for about an hour- they realized that she needed to be seen in ped. rheumatology. After two visits there, the Dr. was very, very confident in her diagnosis.

    We are hoping that we can get things under control a lot better than they are now. We need another Disney World trip soon!!! That would be the best celebration ever!!! She's gone for so long with out an OFFICIAL diagnosis, it's been hard to keep her health under control (or at least manageable!).
     
  20. rosanab1031

    rosanab1031 Mouseketeer

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    Welcome!pixiedust: and :grouphug:

    I am so sorry for what your family is going through! I have never heard of someone so young getting diagnosed. My doctor told me I was young (21 at the time... or 23... I forget) but based on my "limited" recollection we assume I had it since at least 16.

    I would have been furious with that nurse too! Wow. I don't know what makes people think they can say things like that! UGH!!!

    Have you tried yoga? I live in CA and I know many yoga studios offer family yoga classes out here. Stretching can definitely help with the muscle tightness :) Even some light walking. I should really get back into it :rolleyes: But I know how hard it is to feel motivated when you are in so much pain.

    There are some natural supplements that you can talk to your doctor about such as SAM-e and MSM. I was just recently told about MSM by a lady who said its the only thing that keeps her going. Going to go pick some up today.

    I also receive chiropractic care, massage, acupuncture, and muscle injection. They help me a lot but not gonna lie, they can be painful! I feel the results I am having for it are well worth the pain for me.

    I like coconut water. It can be a bit pricey but it really helps in keeping me hydrated! Much better than regular water but the taste can take some getting used to. Sometimes Costco has good sales. I would stay away from the ones that come in plastic bottles though. Leaves a weird taste in your mouth IMO.

    I have vertigo so I often feel dizzy and nauseated. I take meclizine at night and I drink something called Reed's Ginger Beer. It is basically a really strong ginger ale but it helps SO much when I am feeling nauseated. I usually buy mine from Trader Joe's. Again, another acquired taste :) My bf hates the taste but it always makes him feel better so he drinks it.

    It sounds like diet is key for your daughter! I would HIGHLY suggest NO soda and VERY limited fast food :) Really the more natural you can keep things the better!

    Hope you can find some of this information helpful and I hope you can get back to WDW real soon! Sounds like you need it!

    Heat back
     
  21. pannm

    pannm Mouseketeer

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    Yeah! We were shocked. I had always thought it was an 'adult problem' that mostly women experinced (more women then men anyways). Her Rheumotologist said that everyone who HAS it, was born with it and most kids have it and it goes undiagnosed for so long that most people assume it's an adult issue, due to the "facts and studies" on it. The studies done only focus on the age that they receive the diagnosis, NOT when they actually first notice symptoms and problems from it.

    Only a very small % of kids are actually diagnosed and treated for it. It's like 1-2% or some crazy small amount like that. Most teens who are diagnosed with it have already spent years with health issues before the Dr. actually finds out and diagnosses Fibro.

    Her Dr. said that she has 8 cases of kids under 12 with Fibro. and 15 teens. 9 of those teens have been 'doctoring with undiagnosable diseases' for the past several years. Sometimes symptoms present as other things and form into what we know to be Fibro. Like my daughter had crazy fevers ranging from 102-105 for weeks on end, some lasting as long as a month or two. They were unexplainable fevers. Her current Dr. said that about 10 of the teens and children she has all had that exact same fever history! The unexplained fevers slowly got a little better, but only as the pain starts to become worse and other symptoms develop. With the fevers, it's not a common Fibro. symptom, so the Dr.s would look elsewhere for answers (in the genes, blood, organs). And the kids go undiagnosed. As fibro gets 'more developed and understood', her Dr. said that it's still a huge question mark because everyone has different levels of pain, different symptoms, different 'episodes'...

    So much to learn! I feel like it's a bit overwhelming right now. I'm sure we'll get there, it'll just take time.

    We are looking into pediatric massage and there's a woman who does it here where we live. The Dr. said that our insurance should cover it and she wrote out a perscription for it. I'm hoping that's the case! She also suggested trying the medical creme rubs, but not necessarily for muscle pain relief. We have tried two this week- neither has worked.

    Any tips or tricks are greatly appreciated. I'm sure I'll have hundreds of questions! I'm happy I found this thread, as I've been a member of Disboards for quite some time. I'm sure reading some of the other posts on this thread will help out a lot. I'll have to get to it!
     

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