Fibromyalgia Thread

[DumboFan82]

I'm new here. I'm 32, was diagnosed with fibro about 6 months ago; but I've had all the symptoms for 2 years. I want to know if any others here have problems with bad foot pain? My worst pain of all is in my feet. Besides wearing supportive shoes at Disney and rotating what shoes you wear what day, anyone have any tips to reduce foot pain?

 

[SeaSpray]

I'm new here. I'm 32, was diagnosed with fibro about 6 months ago; but I've had all the symptoms for 2 years. I want to know if any others here have problems with bad foot pain? My worst pain of all is in my feet. Besides wearing supportive shoes at Disney and rotating what shoes you wear what day, anyone have any tips to reduce foot pain?

Hi there, and welcome

I have fibromyalgia, and I also have plantar fasciitis, which caused excruciating pain on the bottom of the foot, near the heel, in my case. All of the walked at WDW doesn't help! I've had a few cortisone injections in my heels, and I also had custom orthotic inserts made which I put in whatever pair of shoes/sneakers that I wear each day.

I also have rheumatoid arthritis... so between all of those things, I have to rent an EVC for our WDW trips. Without it, I wouldn't get to the end of Main Street USA.

I know that putting ice on the bottom of your feet, for example, freeze a water bottle then roll it under your foot each evening. It helps with swelling while it keeps the tendon stretched and loose. I can't wear flip flops or any kind of shoe without a foot bed in it. Thick socks help, too! When I go to WDW I stock up on the thick white ankle-length socks with an embroidered Mickey or Minnie on each ankle. I think they might be "Men's" socks, but they are so thick and cushioning to my aching feet. LOL

That's all that I can think of for now. Feel better soon!




Hi to all of the members of our thread here. Hope everyone is ok. I've been a wreck all winter.

Planning our August trip makes me happ, , when I'm able to concentrate enough to think about it, and if my head isn't killing me.

 

[ammag]

Hi all! My name is Amanda, I have had CFS or ME or whatever we are calling it these days for 16 years, fibro for 14. My ability to handle the parks has dissolved quite a bit over the last few years we have been going so I am starting off with a scooter this time. We are going October 30-nov 8 staying at pop. I also have plantar fasciitis, arthritis in my toe, and wide flat feet...makes walking a joy! I'd like to do some activities without the scooter...anyone have good sandal recommendation? Strangely the best ones I've had are just a particular wide sized hush puppies pair..but they no longer make them.

 

[SeaSpray]

Hi all! My name is Amanda, I have had CFS or ME or whatever we are calling it these days for 16 years, fibro for 14. My ability to handle the parks has dissolved quite a bit over the last few years we have been going so I am starting off with a scooter this time. We are going October 30-nov 8 staying at pop. I also have plantar fasciitis, arthritis in my toe, and wide flat feet...makes walking a joy! I'd like to do some activities without the scooter...anyone have good sandal recommendation? Strangely the best ones I've had are just a particular wide sized hush puppies pair..but they no longer make them.

Welcome Amanda

I've been having to use a scooter while at WDW for years now, otherwise I just couldn't do it. I have rheumatoid arthritis, fibromyalgia, and planta fasciitis in both feet, so I feel your pain!! Here's a link to a web site of the brand of sandals that I buy. I have a local store that carries them, so I shop there and try them on first, but this web site will at least give you an idea of what's out there. I recommend a pair with an "orthotic footbed" because that will give you the support you need in your arch for the PF.

http://www.merrell.com/US/en/womens-sandals/

Let us know what you find! I'm always looking for comfortable shoes and sandals.

 

[ammag]

Welcome Amanda

I've been having to use a scooter while at WDW for years now, otherwise I just couldn't do it. I have rheumatoid arthritis, fibromyalgia, and planta fasciitis in both feet, so I feel your pain!! Here's a link to a web site of the brand of sandals that I buy. I have a local store that carries them, so I shop there and try them on first, but this web site will at least give you an idea of what's out there. I recommend a pair with an "orthotic footbed" because that will give you the support you need in your arch for the PF.

http://www.merrell.com/US/en/womens-sandals/

Let us know what you find! I'm always looking for comfortable shoes and sandals.

Thank you! I wonder if they are wide enough though, I've tried a random pair of merely on at a Marshall's and they were not, I've actually gone to the mens department, but that didn't work out. I also have plantar fasciitis, arthritis in my big toes, flat feet/fallen arches and some mystery ankle issue that's causing them to fall apart. I need to find a rheumy and go get checked out further. But I will check out the website and start my search! Last summer I did ok with a pair of Clark's, who also make the service le sneakers I own. Not great though. One thing that helps me and the ortho says is mandatory is to always have a bit of a heel or wedge, definitely helps. I am also going to bring the old sandals I loved to a cobbler see what he can do. So complicated!!!!!!

 

[Iheartdopey10]

Hi I'm Donna and new to this thread too. I was diagnosed about 15 years ago, but I never went back to the doc or got treated. I think I was in denial until this last year when my symptoms and pain got unbearable. I also have osteo arthritis in my hips, back and neck so that doesn't help any. I'm currently waiting to see a back specialist for a couple of compressed discs which I'm thinking will be the easiest fix of all my issues. I'm trying to find out what's the best plan for Disney in June, if a scooter is the way to go or just take it slow. We go to WDW every year, and last year, I still wasn't feeling to badly, but we did Disneyland for Xmas and that was a painful trip for me. I've really slowed down in the last 6 months. I was literally dragging my feet to the point that I got blisters on the bottom of my left foot. My left side is usually more painful than my right. I'm being treated with Flexeril and Tramadol, but due to my place of employment I can only take them on weekends, which makes my work week that much worse. Any suggestions on how to conquer WDW are welcome!

 

[GGT]

I'm Bridgette, I'm 24 and I was diagnosed a little under 10 years ago when I was 15

I suffer from chronic headaches among many other things.

Another thing that could possible be attributed to fibromyalgia is reoccurring stress fractures in my feet. In my right foot, where it primarily happens, it's in my second metatarsal and gradually happens when I wear shoes without arch support in combination with being on my feet for long stretches of time.

During seasonal changes into the colder months I get severe joint pain in my hips, wrists, spine and ribs.

Right now I'm having a lot of trouble with my chest area radiating through to my back. I keep thinking that I need to take my rescue inhaler but it doesn't work. When I take an anti-inflammatory like ibuprofen it helps a little.

I've taken Lyrica but it made me really agitated so it wasn't worth it. As of right now I just cope. I also break a Loritab in thirds and take that when needed. I usually don't take more than 1/3 a day.

I just began Topamax for the headaches and it's REALLY helping. So the headaches are probably more migraine than Fibromyalgia.

I continue to have chronic severe pain at the base of my skull more than anything else. It is constant and rarely ever subsides. There are days where I struggle with the pain over control of my life. I always get through.

I am 54 this year, I was diagnosed with fibromyalgia 23 years ago and the past six months I have had worse pain at the base of my skull, it has been constant and horrible. I told my Dr that things were a bit different so he ordered an MRI and found that I have Chiari 1 malformation. in addition to the fibromyalgia. I suggest that you have that checked out. It can often be diagnosed as fibro.

 

[rosanab1031]

Hello everybody!!! I have been so MIA lately! Hope things are going well for everyone. Haven't had time to catch up on everything. I have been working a FT and PT job so days off have been rare and when I do get them I tend to spend them with the bf I have lost my FT job and my last day is the 28th. It really stinks, but at the same time, I think it will be better for my overall health and well being. I haven't been happy there for awhile. My PT job is as a CM at Disneyland and I LOOOOOOOVE it! It has been so much fun and I have met some amazing people. I'm coming up to my 8 month mark! YIPPEE!!!

My fibro has been fairly manageable even with the crazy schedule. I make sure I get in to see the chiropractor when I can. I can't get massages anymore because unfortunately they just make my muscles hurt more But I did start using essential oils and have found great relief using them! Still not on any medications for my fibro because they just make me sleepy. Also started using this stuff called Thrive to help with energy and it really does help me get through the day! So mostly good news for me. I hope to be on here more regularly once I close shop at the old job

Much love and many pain free hugs to all!

 

[GGT]

Which oils are you using?

 

[mommasita]

HI everyone... I have not posted in so long I feel very guilty about that.. Winter has kicked my butt, like everyone else.

Welcome to everyone.. I am going to make a solid effort at being better..

Well, along with my pap spear being positively bad, then an endo biopsy coming back positive, now my Dr broke his ankle, I am waiting on what we are going to do there..
THen I noticed how much weight I was gaining , hair falling out, etc, etc.. I now have low thyroid, Hashimoto's, to go along with everything else.. UGH... I started on Synthroid in January, just did a blood test this week, see my Dr the last week of the month to see about upping my levels.. Both my Mother, Grandmother and Sister had it removed due to cancer, so it does make me nervous... I was hospitalized twice for hemorrhaging since January.. And oh yeah, I need to find a job... Ugh I tell you.. I just want to fix the Gyno problems, because right there I can't get a job and take any time off for surgery...

What makes me the most miserable is the weight gain.... I am all of 5 feet, and not a big person, so tacking on the 40 pounds in five months really makes me ... also the mood swings..

well, enough of my gloom and doom..

Sending gentle hugs..

 

[chewysmom]

Just checking in. Gentle hugs to all! I've actually had a bit of a break from the really bad pain-until last week. UGH! What a flare it was. Work is getting harder and harder, but we'd never make it w/o my paycheck. So I struggle. My newest complaint is I think I have plantar fasciitis in my left foot. I haven't been to the dr yet, but I have all the symptoms.

The good news is the intense chest pain/left side pain that plagued me for months has really eased off. *knocks on wood*

I am thoroughly enjoying summer break (my kids are homeschooled)-and I'm dreading starting back. It's nice to get up and not have anything that has to be done that day! (I only work weekends.)

Pain free vibes coming everyone's way.

 

[disneyseniors]

I was diagnosed with Fibro 3 years ago and lupus 2 years ago. I am currently taking way too many meds and everytime i go to my rhumy he just wants to add more....My biggest triggers are stress and being over tired. I use to be the energizer bunny now I am much more like eeyore!!!!
My feet, ankles and hips hurt the most and my headaches are horrible....I started going to a massage therapist but it cost way too much and it was only temporary relief.
It is really amazing how debilitating Fibro can be.

Hi Michelle: I also have fms. 2 out of 3 rheumatologists dx'd me with lupus, so I went to the Mayo clinic and they said I had fsm with a higher ana titer. So, after 3 years of different dx's, the mayo dx is the one I use. The doctors tried all the lupus tx's on me and the one that worked the most was prednisone. What are you on for a med that works? Also, I have a question about your lupus dx. What made the difference in the dx of fms to lupus? I'm just curious, as I seem to have all the symptoms of lupus, moreso than fibro? You can pm me if you want or answer on here. Thanks so much

 

[SpiritedHaunts]

I was wondering if anyone could offer some advice. I currently have a FMS diagnosis (plus something no one can find) amongst several anxiety disorders.

Right now it is my legs, knees, back, and shoulders that are the hot points. We have been attempting to do things we want off our lists. So, in early June we rode horses on the beach. Completely forgot how big horses are. But made it up through the 90min ride and back off.

We had flown, as we try, by using SW points to my uncle's all of 45 min away by air. While there my legs swelled like big balloons.


We got to knock a biggie off the top do list, but I am concerned about how well I'll be for our next one.

We have Halloween reservations for Disneyland and are now in a conundrum. Right now I can walk slowly behind a chair and be pushed when needed.

My fear is that the 2 and a half hour flight will swell my legs, I can't be pushed or have fun.

I know everything can change on any given hour with this illness. I would like to get to check off another big fun thing. Problem is i might be hurting then as I am now and not fun out of it, yet know how much we spent on the hotel annd now maybe air, 600 for two we don't have the needed points.

On the other hand it is almost time to roll out the rollator for full time and I wonder if we should go while we can still walk.

Any recommendations on how this trip might be too much or is having ridden the horse, even in pain, a good indicator?

I know we have months to figure it out, but any info would be welcomed.

 

[Glittercat]

While there my legs swelled like big balloons.

Have you spoken with your doctor about this? My knees swell if kept at a 90 degree angle for any length of time and I often have to change positions and ice them. Does ice help bring down your swelling or not? The other things that works (for me) with swelling are to take baths, go swimming (the best!), and lay down on my back with my feet raised up on pillows above the level of my heart.
I think you'll enjoy Disneyland even if in a wheelchair!

 

[Glittercat]

Hello there I'm Rebecca. I'm a mom of two, wife of 16 years, artist, procrastinator, and I'll be 40 next month. My doc has suggested I may have fibro, but I honestly don't know, he will be testing for it. I was diagnosed with juvenile rheumatoid arthritis at age 9. I'm in a wheelchair 90% of the time (the other bit is on crutches) have Ehlers Danlos Syndrome, RA, chronic migraines, and spend about half of life in bed. Flares are worst after sickness of any kind, and currently in the midst of the biggest baddest one in years.
I love Disney and these boards, and just wanted to say hi.

​

 

[disneyseniors]

Hello there I'm Rebecca. I'm a mom of two, wife of 16 years, artist, procrastinator, and I'll be 40 next month. My doc has suggested I may have fibro, but I honestly don't know, he will be testing for it. I was diagnosed with juvenile rheumatoid arthritis at age 9. I'm in a wheelchair 90% of the time (the other bit is on crutches) have Ehlers Danlos Syndrome, RA, chronic migraines, and spend about half of life in bed. Flares are worst after sickness of any kind, and currently in the midst of the biggest baddest one in years.
I love Disney and these boards, and just wanted to say hi.

View attachment 103369​

Glittercat, I am so sorry to hear that you are not doing well. I KNOW what you are saying. No one else who doesn't have ra, fibro, arthritis, can appreciate what we go through on a daily basis! I am curious, re: Ehlers Danlos Syndrome. How did the doctors diagnosis this? I have several symptoms of this disease, but have not yet gone back to the rheumatologist. I'm sick of doctors. It took 3 rheumatologists to dx me several years ago, the most recent at Mayo Clinic. Thanks. If you want, you can PM me to answer.

 

[Glittercat]

Glittercat, I am so sorry to hear that you are not doing well. I KNOW what you are saying. No one else who doesn't have ra, fibro, arthritis, can appreciate what we go through on a daily basis! I am curious, re: Ehlers Danlos Syndrome. How did the doctors diagnosis this? I have several symptoms of this disease, but have not yet gone back to the rheumatologist. I'm sick of doctors. It took 3 rheumatologists to dx me several years ago, the most recent at Mayo Clinic. Thanks. If you want, you can PM me to answer.

Hello there @disneyseniors I'm sick of doctors too, and grew up being afraid of them because of experimental surgeries. I hope you have some that are knowledgable and trustworthy though.

As for EDS it was actually my newest Doc. that realized I fit the mold so to speak upon our first meeting. I had pre-term labor, all of my joints (including ribs) dislocate, brain fog, hyper mobility of joints, GI issues, fatigue, passing out, POTS, weirdly soft skin, POTS, skin tears very easily, but takes a ridiculous amount of time to heal, wide scarring from everything basically I'm a mutant. If you wish to talk further please let me know here, PM, or on pinterest. https://www.pinterest.com/ms_rebecca/adaptability/

These are a few of my scars, and you can see my veins.
Hopefully helpful website... http://learnaboutyourpain.com/types-of-pain/ehlers-danlos-syndrome/

If you think you have EDS please get checked by a doctor.

 

[disneyseniors]

Hello there @disneyseniors I'm sick of doctors too, and grew up being afraid of them because of experimental surgeries. I hope you have some that are knowledgable and trustworthy though.

As for EDS it was actually my newest Doc. that realized I fit the mold so to speak upon our first meeting. I had pre-term labor, all of my joints (including ribs) dislocate, brain fog, hyper mobility of joints, GI issues, fatigue, passing out, POTS, weirdly soft skin, POTS, skin tears very easily, but takes a ridiculous amount of time to heal, wide scarring from everything basically I'm a mutant. If you wish to talk further please let me know here, PM, or on pinterest. https://www.pinterest.com/ms_rebecca/adaptability/
View attachment 104269
These are a few of my scars, and you can see my veins.
Hopefully helpful website... http://learnaboutyourpain.com/types-of-pain/ehlers-danlos-syndrome/

If you think you have EDS please get checked by a doctor.
View attachment 104270

Thanks, glittercat I looked at the list and there are a lot of symptoms I have. I had preterm labor, prolapse with complications (IE: the skin wall was so thin and fragile that I had bleeding from all the sutures which required another surgery one week later to stop the bleeding) pain, fatigue, tendons in feet give way at times, even when I am just standing. It's weird how that feels, like your foot is "just disintegrating". I bruise easily too. I have osteoarthritis, TMJ, and a knee that feels like it is giving way now - will probably need surgery too. So, I guess I should see a doctor who is knowledgable about this. Thanks for the info

 

[Glittercat]

Thanks, glittercat I looked at the list and there are a lot of symptoms I have. I had preterm labor, prolapse with complications (IE: the skin wall was so thin and fragile that I had bleeding from all the sutures which required another surgery one week later to stop the bleeding)

I'm so sorry dear. I totally understand. When I had my daughter I hemorrhaged, tore badly, and lost 1/3 total blood volume, she was healthy! 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

pain, fatigue, tendons in feet give way at times, even when I am just standing. It's weird how that feels, like your foot is "just disintegrating". I bruise easily too. I have osteoarthritis, TMJ, and a knee that feels like it is giving way now - will probably need surgery too.

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?

So, I guess I should see a doctor who is knowledgable about this. Thanks for the info

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.

 

[Glittercat]

I'm sorry about posting the EDS zebra here in the fibro forum. It was bad form, I hope I did not offend, I truly apologize, and won't post such things again.