Fibromyalgia Thread

disneyseniors

DIS Veteran
Joined
Jun 2, 2014
I'm so sorry dear. :hug: I totally understand. When I had my daughter I hemorrhaged, tore badly, and lost 1/3 total blood volume, she was healthy! :D I was in the hospital for a week. lol. They still let me nurse her and stuff though and I'm very grateful for the blood donors, and hospital staff. <3

It sounds like you're dealing with some rough symptoms. Fibro and EDS often go together, if you ever want an ear I'm here okay?

Do you have a good relationship w/ your doctor? There are a couple of blood tests they can use to narrow down whether you've an auto-immune disorder, my doc did several on me. Wishing you nothing but the best as you go forward.
Thanks so much for the support. I will let you know what the rheumatologist says:)
 

SpiritedHaunts

Mouseketeer
Joined
Aug 3, 2008
I was just wondering if anyone else has a place(s) where you get the most of your pain. I now have bad arms too. And am having foggy moments. So, no ecv for me and possibly no wheelchair either.

Is it less enjoyable to go to WDW with really bad pain all over?
Ever had to do a hotel visit where the hotel is the only place you can get around, all be it very slowly?
 
  • rosanab1031

    Mouseketeer
    Joined
    Feb 19, 2013
    WOW!!! I have a lot to catch up on! Sorry I have been MIA. I have been pretty busy and rarely on the computer anymore since it is just so easy to do everything on my phone. I know disboards has an app but it never works on my phone :(

    Fibro for me has been on and off. I am definitely less stressed out and that helps a lot! Chiropractic has been helping me a lot as well as essential oils. I use a few different doTerra products and I have noticed a significant difference when I use them on a regular basis. Other than that nothing really new for me :)
     

    SpiritedHaunts

    Mouseketeer
    Joined
    Aug 3, 2008
    Well, as my one friend said,'"I am so done with this. "

    I am sick of asking for help and getting none, from online boards to actual doctors to family.

    I am currently like a beached whale. I rely on my almost 65 yr. Mother to get of bed, to feed me and to take me places. I actually weigh less than before, but still have 50 magical pounds to get back to the me before diagnosis.

    My shoulders both scream in pain everytime I have to reach for something. My knees, which have never worked right are about to go. Headaches are near constant. My legs feel like they are made of stone. I have an inflammational issue which may be causing my white blood cell levels to rise. I can only use a cane while out.


    So, I am done. I realize that this illness(s)I have are different for each person, but i am still done! I can no longer take the silence or the pain. Once I decided that I would go on a planned trip in September for my birthday...my legs swell even more so.

    Last time I used a wheelchair as a walker and a seart. Thought about trying an ecv this time, but then the doctor discovered calcification in my right shoulder, probably in the left too, so no holding a throttle down.

    I want to remember how much fun we had last trip and not have my last trip (which was going to DLR for Halloween as a bucket list item) as way less than steller. Too many questions...is it worth a day off a non expering ticket worth it for the 3fp+s...ect...ect...ect.

    I am well aware I am venting and have a feeling I won't even earn a mention or reply, but if I do than I thank you and hope I get a chance to read it. Many tests are coming that my proclude me from reading the boards (which only make me want cry now ) or the tests may say that I am to ill to oo anyway.

    I am so sick and tired of being sick and tired.
     
    Last edited:

    lanejudy

    Moderator
    Moderator
    Joined
    Oct 27, 2011
    @SpiritedHaunts :hug: Wow, it sounds like you have been having a really rough time. I wish I had some advice but I just wanted to let you know I'm thinking about you. Good luck with your tests and your travel plans, and hopefully tomorrow will be a better day!
     
  • rosanab1031

    Mouseketeer
    Joined
    Feb 19, 2013
    Well, as my one friend said,'"I am so done with this. "

    I am sick of asking for help and getting none, from online boards to actual doctors to family.

    I am currently like a beached whale. I rely on my almost 65 yr. Mother to get of bed, to feed me and to take me places. I actually weigh less than before, but still have 50 magical pounds to get back to the me before diagnosis.

    My shoulders both scream in pain everytime I have to reach for something. My knees, which have never worked right are about to go. Headaches are near constant. My legs feel like they are made of stone. I have an inflammational issue which may be causing my white blood cell levels to rise. I can only use a cane while out.


    So, I am done. I realize that this illness(s)I have are different for each person, but i am still done! I can no longer take the silence or the pain. Once I decided that I would go on a planned trip in September for my birthday...my legs swell even more so.

    Last time I used a wheelchair as a walker and a seart. Thought about trying an ecv this time, but then the doctor discovered calcification in my right shoulder, probably in the left too, so no holding a throttle down.

    I want to remember how much fun we had last trip and not have my last trip (which was going to DLR for Halloween as a bucket list item) as way less than steller. Too many questions...is it worth a day off a non expering ticket worth it for the 3fp+s...ect...ect...ect.

    I am well aware I am venting and have a feeling I won't even earn a mention or reply, but if I do than I thank you and hope I get a chance to read it. Many tests are coming that my proclude me from reading the boards (which only make me want cry now ) or the tests may say that I am to ill to oo anyway.

    I am so sick and tired of being sick and tired.
    Wow. I am so sorry you have been having a rough time. Each disease really is different for each person. For example, I literally hurt everywhere! I am far too aware of anything and everything that touches me. I drink coffee and other caffeinated drinks to keep up my energy and I take pain meds when everything gets to be too much.

    I am very lucky that I really don't have any other health issues that compound the fibromyalgia. I am naturally on the thinner side but I do have to watch what I eat so I don't gain too much. I gained about 15 pounds and boy could I feel it.

    I really hope with all the tests they are able to find something to help ease your pain. I know it's not a fun process. Good luck with everything! Sending love and gentle hugs!
     

    rosanab1031

    Mouseketeer
    Joined
    Feb 19, 2013
    I was just wondering if anyone else has a place(s) where you get the most of your pain. I now have bad arms too. And am having foggy moments. So, no ecv for me and possibly no wheelchair either.

    Is it less enjoyable to go to WDW with really bad pain all over?
    Ever had to do a hotel visit where the hotel is the only place you can get around, all be it very slowly?
    I found the humidity and heat actually made me feel better most of the time. I took ibuprofen when things got too bad. Do you have anyone who can push you in a wheelchair?

    We also would use the jacuzzi a lot at the hotel. Helped out all the achy muscled after a long day :)
     

    chewysmom

    Mouseketeer
    Joined
    May 7, 2005
    Well, as my one friend said,'"I am so done with this. "

    I am sick of asking for help and getting none, from online boards to actual doctors to family.

    I am currently like a beached whale. I rely on my almost 65 yr. Mother to get of bed, to feed me and to take me places. I actually weigh less than before, but still have 50 magical pounds to get back to the me before diagnosis.

    My shoulders both scream in pain everytime I have to reach for something. My knees, which have never worked right are about to go. Headaches are near constant. My legs feel like they are made of stone. I have an inflammational issue which may be causing my white blood cell levels to rise. I can only use a cane while out.


    So, I am done. I realize that this illness(s)I have are different for each person, but i am still done! I can no longer take the silence or the pain. Once I decided that I would go on a planned trip in September for my birthday...my legs swell even more so.

    Last time I used a wheelchair as a walker and a seart. Thought about trying an ecv this time, but then the doctor discovered calcification in my right shoulder, probably in the left too, so no holding a throttle down.

    I want to remember how much fun we had last trip and not have my last trip (which was going to DLR for Halloween as a bucket list item) as way less than steller. Too many questions...is it worth a day off a non expering ticket worth it for the 3fp+s...ect...ect...ect.

    I am well aware I am venting and have a feeling I won't even earn a mention or reply, but if I do than I thank you and hope I get a chance to read it. Many tests are coming that my proclude me from reading the boards (which only make me want cry now ) or the tests may say that I am to ill to oo anyway.

    I am so sick and tired of being sick and tired.
    First of all, big gentle (((HUGS))). I get it-I think most of us on this thread do too. While we all have different levels of severity, I think we've all felt the horrors of a flare.

    I have daily pain that never, ever goes away. I can't stand to be touched-my skin just hurts so badly. It has caused a lot of hurt feelings for dh b/c he loves to pick around/horseplay and I end up in tears almost b/c he hurt me w/o meaning to. (something that most people wouldn't even register-hurts me.) My kids "get it" and will walk up to me and say "Gentle Hugs Mom."

    My sleep pattern stinks. My eyes popped open at 2:30 am and I couldn't get back to sleep no matter what. By the time the kids get up, I'll be ready for a nap-but I can't do that b/c it's time for school then. (I homeschool them.) We'll continue on that way until after lunch when I finally will be able to lay down for an hour-only to get up feeling way worse than I did when I laid down. :( :( This is my life M-F.

    I hope you're feeling at least a bit better, and that you're able to go on your WDW trip. I must admit-I felt so much better at Disney the 2 times we've gone. I used to be so worried that I would be stuck in the room, but twice I've gone with great results.
     

    disneyseniors

    DIS Veteran
    Joined
    Jun 2, 2014
    I'm so sorry dear. :hug: I totally understand. When I had my daughter I hemorrhaged, tore badly, and lost 1/3 total blood volume, she was healthy! :D I was in the hospital for a week. lol. They still let me nurse her and stuff though and I'm very grateful for the blood donors, and hospital staff. <3

    It sounds like you're dealing with some rough symptoms. Fibro and EDS often go together, if you ever want an ear I'm here okay?

    Do you have a good relationship w/ your doctor? There are a couple of blood tests they can use to narrow down whether you've an auto-immune disorder, my doc did several on me. Wishing you nothing but the best as you go forward.

    :hug: Wishing you lots of good luck. :)
    Hi Glittercat: Sorry it's taken me so long to get back to you. It was not intentional. I didn't go to the rheumatologist, as I decided I didn't want to know and I feel there is nothing more to be done, so why go??? I know it's a bad attitude, but after almost 20 years of this, I just didn't want to go through more tests, etc.
    I now have plantar fasciitis and am trying to get it "fixed" before our trip to WDW in November. But I'll probably have to use a EVC this time to get around. Maybe later on I will get checked out again, but I'm kinda burned out on the whole medical thing right now. Hope you are doing well, and thanks for the support!
     
  • chelynnah

    DIS Veteran
    Joined
    Sep 12, 2015
    Well, as my one friend said,'"I am so done with this. "

    I am sick of asking for help and getting none, from online boards to actual doctors to family.

    I am currently like a beached whale. I rely on my almost 65 yr. Mother to get of bed, to feed me and to take me places. I actually weigh less than before, but still have 50 magical pounds to get back to the me before diagnosis.

    My shoulders both scream in pain everytime I have to reach for something. My knees, which have never worked right are about to go. Headaches are near constant. My legs feel like they are made of stone. I have an inflammational issue which may be causing my white blood cell levels to rise. I can only use a cane while out.


    So, I am done. I realize that this illness(s)I have are different for each person, but i am still done! I can no longer take the silence or the pain. Once I decided that I would go on a planned trip in September for my birthday...my legs swell even more so.

    Last time I used a wheelchair as a walker and a seart. Thought about trying an ecv this time, but then the doctor discovered calcification in my right shoulder, probably in the left too, so no holding a throttle down.

    I want to remember how much fun we had last trip and not have my last trip (which was going to DLR for Halloween as a bucket list item) as way less than steller. Too many questions...is it worth a day off a non expering ticket worth it for the 3fp+s...ect...ect...ect.

    I am well aware I am venting and have a feeling I won't even earn a mention or reply, but if I do than I thank you and hope I get a chance to read it. Many tests are coming that my proclude me from reading the boards (which only make me want cry now ) or the tests may say that I am to ill to oo anyway.

    I am so sick and tired of being sick and tired.
    I just stumbled across this thread and have only read this last page. I, too, struggle, so understand how you feel about this. My last trip in Jan 13 I gave up my pride and went back and forth between a wheelchair and an ECV depending on the day and it made a HUGE difference to my trip. I was able to enjoy the trip and not crawl into bed crying every night. I was able to do absolutely everything I wanted to and more. The throttle on the ECV is very light to move. I get really bad carpal tunnel, but had no issues at all using an ECV all day. Depending on if you rent from Disney or from offsite, some of the offsite ones you can adjust the handles so they shouldn't strain your shoulder and aggravate that issue.

    We are staying off-site so would have trouble transporting a scooter in the rental car, so this time I'm renting a wheelchair from offsite so I have it all the time, but I may still rent a park ECV here and there.

    I do understand the pain and the frustration. But if you can make your dream trip work then you should go for it if you have someone to travel with who understands and can help

    All the best

    (Edit for typos)
     
    Last edited:

    SpiritedHaunts

    Mouseketeer
    Joined
    Aug 3, 2008
    Thanks for the few replies, it is so nice that someone cares. Kinda supprised nothing was said my last email. I am going to blame the Web site not me.

    I am currently in pt and ot therapy so i willbe able for elbow and neck surgery. Probably aspinal surgery too...so who knows what tomorrow may hold. I live in moments as apposed to day by day.
     

    kiltclan

    Kilt up!
    Joined
    Jan 11, 2015
    Hi all! My name is Marci and I'm 25 and new to the thread, though my tale is a bit convoluted. I was diagnosed with Fibro about a year ago after trying to hunt down the cause of my incessant headaches and nausea. My rheumatologist is under the impression that I've been dealing with this most of my life and have been attempting to consciously ignore most of the overall body aches since I had been told that it was "all in my head"; my mother 'helpfully' chimed in at the appointment with "she's been complaining about 'phantom' pains since she was 5!". He had me taking notes on all the pains and symptoms I was experiencing, trying to identify whether I suffered from anything more than Fibro.

    However, I didn't let any of that stop me from enjoying my Disney. I still went to the parks and had a ton of fun and tried not to let it affect me. I did notice however, I needed to start taking more breaks more often and to start eating small snacks more often in an attempt to keep the energy level at what it used to be. The distance of Disney was never a problem either, I could handle the walking there like nowhere else, the Disney magic was my champ...

    Then, about 3 months ago, I was struck by a car while riding my bike on my way to work. I was immediately diagnosed with a Herniated C4-C5 disc as well as a torn rotator cuff and suddenly, I was back in. Since the accident, it's like all those fibro symptoms I had tried to tuck away as 'nothing' have all come raging back out. I'm in almost constant pain in my lower back (which supposedly shouldn't be affected by the disc), and every morning, I spend about 30 mins praying to the porcelain gods to let today be the day I don't toss my cookies.

    As a regular go-er of Disney and at my age, it terrifies me to think that I may have to start relying on a wheelchair. I'm the stubborn goat type of person who will avoid using it at all costs, but the idea of the distances of walking, and standing still in one place and the havoc that could wreak on me is more frightening than anything else.

    Other than possibly using a wheelchair, how do ya'll manage your pain when out and about? My doctor gave me lidocaine patches and voltaren gel, I've had the most promise with the lidocaine, but it doesn't really penetrate deep enough to hit the worst affected muscles. He also advised I use otc pain meds, but overall they just don't do enough for me.
     

    chelynnah

    DIS Veteran
    Joined
    Sep 12, 2015
    Hi all! My name is Marci and I'm 25 and new to the thread, though my tale is a bit convoluted. I was diagnosed with Fibro about a year ago after trying to hunt down the cause of my incessant headaches and nausea. My rheumatologist is under the impression that I've been dealing with this most of my life and have been attempting to consciously ignore most of the overall body aches since I had been told that it was "all in my head"; my mother 'helpfully' chimed in at the appointment with "she's been complaining about 'phantom' pains since she was 5!". He had me taking notes on all the pains and symptoms I was experiencing, trying to identify whether I suffered from anything more than Fibro.

    However, I didn't let any of that stop me from enjoying my Disney. I still went to the parks and had a ton of fun and tried not to let it affect me. I did notice however, I needed to start taking more breaks more often and to start eating small snacks more often in an attempt to keep the energy level at what it used to be. The distance of Disney was never a problem either, I could handle the walking there like nowhere else, the Disney magic was my champ...

    Then, about 3 months ago, I was struck by a car while riding my bike on my way to work. I was immediately diagnosed with a Herniated C4-C5 disc as well as a torn rotator cuff and suddenly, I was back in. Since the accident, it's like all those fibro symptoms I had tried to tuck away as 'nothing' have all come raging back out. I'm in almost constant pain in my lower back (which supposedly shouldn't be affected by the disc), and every morning, I spend about 30 mins praying to the porcelain gods to let today be the day I don't toss my cookies.

    As a regular go-er of Disney and at my age, it terrifies me to think that I may have to start relying on a wheelchair. I'm the stubborn goat type of person who will avoid using it at all costs, but the idea of the distances of walking, and standing still in one place and the havoc that could wreak on me is more frightening than anything else.

    Other than possibly using a wheelchair, how do ya'll manage your pain when out and about? My doctor gave me lidocaine patches and voltaren gel, I've had the most promise with the lidocaine, but it doesn't really penetrate deep enough to hit the worst affected muscles. He also advised I use otc pain meds, but overall they just don't do enough for me.
    Have you tried a tens machine? I found this made a huge difference for me on a recent trip.
     

    kiltclan

    Kilt up!
    Joined
    Jan 11, 2015
    Have you tried a tens machine? I found this made a huge difference for me on a recent trip.
    I've honestly never tried one, but I'm willing to try anything for myself now. From what I've found online, there are a ton of different types at different price ranges. Is there a model in particular you'd recommend?
     

    chelynnah

    DIS Veteran
    Joined
    Sep 12, 2015
    Unfortunately I'm in the UK so any types we have here won't the same as you have there. I would definitely recommend getting one with 4 pads/connections so you have more options where to put them. Read the reviews and see what people think. If you're visiting your Dr soon ask what they might recommend.

    To be honest I picked up a cheap no-name one while I was there on my two week trip in November. It just had two lead connections, but I bought the long pad to use across my lower back. I wore it while driving to/from the parks on a couple of days, and at the townhouse a few evenings and it made a huge difference. The only reason I didn't use it in the parks was that being cheap the control was the size of a computer mouse so bulky to have in my pocket and easily damaged. My friend wore her professional one all the time, and her controller was Slim and fit neatly into her back pocket.

    I use it now at home, and am just starting to research professional ones for myself. What was nice about this one is it had various types of 'pulses' which seemed to work really well.
     

    my3princes

    <font color=red>Looking for a milestone to claim<b
    Joined
    Mar 23, 2004
    My day finally came...I have been diagnosed with Fibromyalgia. While I'm happy to finally have a name for the suffering that I am experiencing, I wonder how long it will take to regain control of my body and mind. We are starting with gabapentin to see how that works then we'll move on from there if necessary. In the meantime, we have a trip to WDW which was planned months ago. I'm determined to go and have a good time. We are renting an ECV from an offsite rental place. I'm hoping that helps. Any other pointer that I need to know before our adventure? We own DVC and this will be our 15th trip. My kids have flat feet and one has severs disease. The little one needs a guest assistance card (whatever they are called now) as he can't stand for any length of time. I should be okay with just the ECV for me? I can use it in lines? This is all new and right now the pain is not in any way under control.
     

    Marlyn

    DIS Veteran
    Joined
    Nov 18, 2003
    Hi, I have recently been diagnosed with Fibromyalgia. In hindsight I've been likely suffering from it for years but symptoms got worse over the last 2 years. I have severe degenerative disc disease to my lower back as well as my cervical spine and I always attributed any pains to that.
    The past 4 months have been tough. I had to stop work in January. I am a nurse and my back pain, neck pain and hip pain started interfering with my ability to do my job. I also got headaches frequently and aching to my lower legs and ankles. I also started having severe morning stiffness, as well as stiffness when I had sat for too long. Again, I attributed it all to my arthritis in my spine.
    I had started going to massage, but I found my muscles so painful after massage. I didn't understand how everyone always felt so good after going for a massage and I was in pain following. It took an amazing physiotherapist and a chronic pain specialist to help me realize and accept the fibromyalgia diagnosis. I'm still struggling to deal with it.
    I have been started on Lyrica which I take twice a day. It has helped with some of the burning pain sensations, but I still get terrible leg aching in the night as well as horrible stiffness in the morning. When I try to increase my activity I pay for it with pain and stiffness.
    I have also been getting trigger point injections and will start prolotherapy in a couple weeks. I am not sure how I feel about having that. Have any of you had that done?
    I have a trip to wdw planned in July. 2 weeks with my 21 year old twin boys. I'm so scared I won't manage. It was on our trip 2 years ago that I first started having the leg pains at night.
     


    Connect

    Disney News and Updates

    Get Daily Email Updates


    Top