Do you have Fibromyaliga?

[Haley Whippet]

I was wondering how many members here also have fibro.
Do you do anything special to make your WDW trip eaiser?
I like to take things easy, Use my ecv durring the day so I have enough energy to go out in the evenings on foot.
I watch what I eat and go back to our room to take a rest in the late afternoon. We usually go to WDW for a week and I work hard at relaxing as much as I can to make it through the week.
When we get home it takes 2 or 3 days of rest to recover..
What do you do?
Deb

 

[mickeywho?]

I would love to hear some suggestions that can be worked into our trip. My mom will be coming with us in February (she has fibro) and I know already that the lower temperatures will help to make the trip more comfortable - compared to going in the hotter months. She's planning to head to the parks with us early in the morning and then going back to the room when she begins to feel worn out so that she can rest for a while before dinner. The hot tubs will certainly get lots of use as well. (She's also discovered lately that she needs to stay away from any foods with sucralose - she's not sure why but it seems to agrivate her symtoms)
Any suggestions to help her enjoy the trip would be appreciated.

 

[Haley Whippet]

I would love to hear some suggestions that can be worked into our trip. My mom will be coming with us in February (she has fibro) and I know already that the lower temperatures will help to make the trip more comfortable - compared to going in the hotter months. She's planning to head to the parks with us early in the morning and then going back to the room when she begins to feel worn out so that she can rest for a while before dinner. The hot tubs will certainly get lots of use as well. (She's also discovered lately that she needs to stay away from any foods with sucralose - she's not sure why but it seems to agrivate her symtoms)
Any suggestions to help her enjoy the trip would be appreciated.

The one thing she needs to do is NOT push herself. Take it slow and easy, Rent a ECV or wheelchair, There is just too much walking for a person with fibro. I use to try to walk it all, But endeded up is so much pain after a day that it ruined the rest of the trip,With the ECV it makes all the difference. Take breaks, enjoy yourself.
Deb

 

[goofy4mykids]

Hi, I have recently been diagnosed with fibro - I have an 18 month old DD and a 6 year old DS. At this point I do not know what to do to make my self feel better but I refuse to cancel our WDW trip. My DH extended it another week so I could rest and not feel guilty about taking time away from the kids and he also rented a ECV from an outside co. Any other suggestions would be greatly appreciated. Also what do you do on a daily basis at home to feel better... Dose it get better?

 

[Haley Whippet]

Dear Goofy4mykids,
I am sorry to say it will not get better, It can get worse. But if you take care of yourself you will be OK. The main thing is as I said before, Rest, eat well, Take it easy.
If you have lots of pain use heat rub, anti inflamatories, or a heating pad.
Look into a support group. Check out this site for lots of great info;
http://fmaware.org/index.html
feel free to email me too...
Deb

 

[goofy4mykids]

Hi Deb Thanks for the info. The NFA web site is helpful. I do eat well, rest is hard with small children. Adjusting to the change in Lifestyle is hard, my 6 year old dose not understand - to make things harder he has ADHD, SID and possibly OCD. So having a stress free life is not possible. But I do have allot to be grateful for and I just take one day at a time and try to go with the flow. I have always been a doer' and a go getter'. Now its hard to lift my head off the pillow. Its hard for me to accept that I will not get better, That I just have to accept things. that has never been my style. The doctor has told me the same thing, I have to accept my illness and adapt. I know I am babbling on and on but my question is, How do you adapt/accept. How long have you had Fibro? and What caused yours. They think mine was "caused" by "Cyberknife brain radiation" I had in FEB 06 for a brain AVM. since then I have had nothing but problems. numbness is my hands, feet, and face pain all over etc... Thanks for taking the time and starting this post. I would not wish this on anyone but its nice to know I am not alone.. Kim

 

[Bird-Mom]

I have it too. We take it slow at the parks because we have 2 small children. I love naptime! When I was pregnant with my second dd, it almost felt as though I didn't have it; maybe it went into remission. She is 2 now, and I haven't had a flare up in a long time (over 8 months, knock wood). I attribute that to very regular chiropractic care, at least twice/month. Eat well, try to get some exercise (which is awful when you are hurting), and try to get sleep. I was already an insomniac. I have awful sleep problems.

Kim, my older dd is developmentally delayed with some speech/language problems, so I sympathize.

mickeywho, sucralose also bothers me. I try to avoid it, but I haven't paid attention if it makes things worse.

 

[goofy4mykids]

Thanks Bird-Mom - MSG, bothers me Ill have to watch for sucralose.

 

[chanda7]

As Bird-Mom mentioned, some/all of your symptoms can go into remission. I've had it for 12 years, and I am in much better shape now than when it started. I had to be carried around from the car to a building, but now, I can even do a theme park on foot. Taking a beta blocker and biofeedback training really helped me initially. I discontinued the beta blocker 5 years ago when I got pregnant with my first. Pregnancy and breastfeeding seemed to help my symptoms as well. Of course, there is always the fear things will get really bad again, that when I get "down" it could last for months or years instead of days.

 

[Haley Whippet]

I have had fibro for about 15 years. I still get angry with myself that I can't do everything I use to do . I was a very active person before this.
Sleeping is a big issue for me, I don't sleep well at all. Only a few hours at a time.
I have numbness in my arms and shoulders and the pain in my chest and neck is the worst.
Did I mention dizzyness and "Fibro Fog???
I am a fighter and try to get past it, But somedays just can't.
I will never let it ruin a Disney trip Because WDW is my happy place and I am so happy when there I can almost forget the pain..
You just have to take it 1 day at a time and have very good support from your family. Without my Husband to help me I couldn't get through the bad days.It is so hard for some people to understand what we go through.
Deb

 

[JenJen]

Dear Goofy4mykids,
I am sorry to say it will not get better, It can get worse. But if you take care of yourself you will be OK. The main thing is as I said before, Rest, eat well, Take it easy.

Deb

I have to disagree with this one sorry. I DO agree with you to a point about taking care of yourself and eatting right that is awesome but Everyone is so differant with fibro so even though you have become worse and you have not gotten any better please do not make others loose there hope of one day getting better. I believe the human spirit and hope are a very strong thing and once you loose those the body breaks down.
I was diagnosed with fibromyalgia at 12 years of age. I have good days and have bad days. I am not cured but I have learn to manage my condtion to the point that I am living a very full life. (fianlly) The best thing I ever did was stopped working and started taking care of my body. Putting healthy foods in me and exercising (very mild exercise) The worst thing i ever did was go on tons of medication the drs were perscribing me. I really believe the medications make fibromyalgia worse. The best thing i ever did for myself is get a membership to the YMCA and started swimming everyday. When I first started out I could barely move let a lone swim but I slowly worked my way up to being able to do 45 laps now!!!! Whaaa Whoo! (took over a year!)

I went from 97 pounds to 197 pounds in one year because of all the drugs they had me on and I still felt like crap! None of them made me feel better so why take them? Now I am a healthy 145 and I only take a medication for my heart and seizures. I went from 12 medications to 2.

I think when you have fibro you are more sensitive to everything so you just have to treat your body like a fagile piece of glass and shine it everday. If you take care of it it will pay you back will feeling good and staying healthy. If you don't take care of it you will be in bed all day in pain and feel fatigued.

Fibromyalgia sucks! But it can be managed and you can feel better if you really take the time to take care of you. It was very hard for me to do becasue I am a care giver but I had to tell myself I am not good to the ones I love unless I am healthy.

(((((((((((((((((((hugs)))))))))))))))))))))))))))
Jen

 

[Haley Whippet]

I have to disagree with this one sorry. I DO agree with you to a point about taking care of yourself and eatting right that is awesome but Everyone is so differant with fibro so even though you have become worse and you have not gotten any better please do not make others loose there hope of one day getting better. I believe the human spirit and hope are a very strong thing and once you loose those the body breaks down.
I was diagnosed with fibromyalgia at 12 years of age. I have good days and have bad days. I am not cured but I have learn to manage my condtion to the point that I am living a very full life. (fianlly) The best thing I ever did was stopped working and started taking care of my body. Putting healthy foods in me and exercising (very mild exercise) The worst thing i ever did was go on tons of medication the drs were perscribing me. I really believe the medications make fibromyalgia worse. The best thing i ever did for myself is get a membership to the YMCA and started swimming everyday. When I first started out I could barely move let a lone swim but I slowly worked my way up to being able to do 45 laps now!!!! Whaaa Whoo! (took over a year!)

I went from 97 pounds to 197 pounds in one year because of all the drugs they had me on and I still felt like crap! None of them made me feel better so why take them? Now I am a healthy 145 and I only take a medication for my heart and seizures. I went from 12 medications to 2.

I think when you have fibro you are more sensitive to everything so you just have to treat your body like a fagile piece of glass and shine it everday. If you take care of it it will pay you back will feeling good and staying healthy. If you don't take care of it you will be in bed all day in pain and feel fatigued.

Fibromyalgia sucks! But it can be managed and you can feel better if you really take the time to take care of you. It was very hard for me to do becasue I am a care giver but I had to tell myself I am not good to the ones I love unless I am healthy.

(((((((((((((((((((hugs)))))))))))))))))))))))))))
Jen

Jen I do agree with you, medications can make you feel bad, And I will not take any heavy duty drugs, The doctors may want to drug you out, But it is your choice what to take or not take.
By saying it can get worse it a fact, And you will have good days and bad days. It is different for everyone, Follow what your body tells you .
Deb

 

[dclfun]

My SIL has fibro and is helped greatly by stretching exercises and no or low impact exercises, especially swimming. She works fulltime as a teacher and usually visits the YMCA after work to do her swimming. That is "her" time. She is of course fortunate to have a husband who is supportive and realizes that if she doesn't do the swimming and stretching she will have problems the next day. I agree that everyone is different with just about any condition but no one should ever lose hope. I have ALS which is considered a terminal illness but I haven't lost hope and plan to live a long life even though it's a very adapted one!---Kathy

 

[LindaBabe]

Always been a gogogo type person - I've had Fibro about 10 years. (Have AdHD, too) Tough lesson - learning to ask for help - learning to say "I need . . ." Most people are happy to help if you tell them your needs.

The docs don't have many answers, in my view. I have felt better when on heavy antibiotics. I felt better when on Prednisone for shingles - you can't stay on that stuff - it's bad - but it said to me that I COULD feel better if I could find the key. I 'm a researcher by trade, and I went hunting for the key.

I feel better now than I have at any other time during the 10 years - work full time, do my own grocery shopping again and even venture into the garden, which had been sorely neglected. This is what i've done to help myself:

Core exercises - the book The Core Program by Peggy Brill. After three years, I still do the basic exercises, have not progressed beyond that but can do many more reps, am much more mobile, flexible and not in continuous pain.

Now I'm avoiding Nitrites, Nitrates, Sulfites after I discovered the FibroFog was way worse after their consumption. That means avoiding anything smoked - like bacon and salmon, and most wine.

Vitamins - LOTS of vitamins - I did not notice a difference right away but after time - I take Glucosamine/Chondritin, E, B complex, Calcium, Potassium, GTF Chromium, a big FishOil capsule, and a multiple vitamin every day - all Solgar brand - Don't know that the brand matters but noticable improvement about a month after exhausting my supply of generic vitamins.

Oh, Almost forgot - also did a stint of therapy with a psychologist which certainly increased my overall feeling of well-being, albeit probably did nothing for the fibro.

I use a cane in crowded areas, shopping, and on rough ground, an ECV at WDW, and a handicapped parking ticket when I need it. Alternate sitting and standing where I can.

NEVER GIVE UP! NEVER GIVE UP! NEVER GIVE UP!

 

[Haley Whippet]

I totally agree NEVER GIVE UP!
I won't and thanks for your info on what is working for you.
I walk about a mile or more aday with Miss Haley, pain or not I walk..
Deb

 

[goofy4mykids]

WOW! ALL OF YOU ARE GREAT!! You are saying what I need to hear! I have been having a tough week and have to admit sitting on my pitty pot. I was in the ER last week, My Contractor walked off our job so now we have to sue him. My 6 yr old DS needs to see a Phys. I see my doctor tonight and I am still waiting to see if I am excepted to SSD. If SS denies me I do not know what we will do, we may have to move to a cheaper state because NJ is to expensive to live in. Needless to say the stress level in the house is high an my body is feeling it. But all your stories of strength give me Lots of Hope that things will get better. And I will not give up.

AS I am typing this reply I just got a phone call from my DF, Her cousin was in a car accident last night and her 8 month old DD is in Critical condition with a collapsed lung and brain swelling. What a dose of reality...I am going to go hug and kiss my kids Thank god for what I have and say a prayer for baby Ellen...Please send Prayers her way.....

 

[Haley Whippet]

I hope Baby Ellen will be OK, We will keep her in our thoughts.
If you get turned down for SSDI don't quit,It is not uncommom to be turned down. You may just need to get a disability lawyer to take care of your case, He should not charge you anything, Hw will be paid by SSDI.
I think the weather may be causing the flare up's, Mine has been going on all week...
Good Luck.

 

[zumbergc]

One thing that has helped me is going organic with the meat. Switching from ham (as an example) that is loaded with nitrates, to one that is nitrate free, and antibiotic free.

We shop at a store called Trader Joe's, there is another store called Whole foods, I believe its an organic food store too in my area.

I'm not sure if its all the preservatives in food, meat which caused me the most problems or what. I try to eat things more naturally. Fruits, veggies, that are raw. Organic meat, with very little spices or other things added to it. You'll have to figure out for yourself what possibly your eating that might be aggrivating some of your symptoms.

I'm a big vitamin fan like the previous poster's of vitamins. Have to say I take all those but I take the liquid lemon cod liver oil. It was rough going that first week, but not a problem after that. I got some of my vitamin line from my chiropracter's office. I agree chiro care has really helped me out.

I noticed a huge difference when I switched to a generic or a "popular" calcuim suppliment to the line they carry. My arms , hands started hurting with in a day or too. I was trying to figure out what I had done wrong, and it was the vitamins, switching to a generic/brand name one that my body wasn't absorbing compared with the line at the doc's office. I put one pill in a glass of water, and a one pill of the brand name stuff in water. The brand name stuff didn't really dissolve, but the one my chiro carries does. Plus, its a snap to break those huge things, compared to the brand name ones.
Its all up to your body and what it needs, what it will absorb, and what it doesn't like.

Make sure you get enough magnesium, they help your muscles relax. If you start taking magnesium, just be aware it can cause the runs. So, start slowly, for a week, make sure everything is fine, then add more until your at your suggested dossage.

I stretch every morning. I even stretch at disney. My husband know it takes me for ever in the morning because I stretch and do morning exercises. It takes me at least 30 min to an hour. Depend how thorough, or how sore I am that morning.

One thing that I avoid. In some water classes, and yoga classes I've been in. They do the thing where you tighten one muscle of your body, and then progressively tighten the rest of your body. I don't recommend doing that. OK, regular people can tighten, and then release, and then the muscles release. Well, mine don't release and I'm more tight. Take that time to do some relaxing breathing, and work on just relaxing what muscles are feeling the most tight. Maybe someone else has a different opinion about this technique I see in some organized classes. I'm not saying avoid the classes, I'm suggesting modifying the class to make things work for you.

One site I got help from was a fibro group over at yahoo groups.

I get massages to work out my chronic tight muslces. No body I know in real life has a train of knots up their legs, back, and arms. You can play connect the dots with all the trigger points i have that are active.

Good luck,

Connie

 

[Haley Whippet]

Thanks Connie,
It is so good to hear form everyone and what they do to help their Fibro,
Deb

 

[travelitis]

I have fibro, and mine has gotten better, too. None of the diet/vitamins had any effect on me. About 4 yrs. ago I crashed to the point I was lying in bed in excruciating pain. You know how it is. I'd move my arm slightly and pain would scream the length of my body. I had a rough couple of years, but the last 2 I've really improved. I had FMS symptoms long I sought treatment and thought I was going to need both hip joints replaced I was having so much pain. lol! I had to rent an ECV, and I still would except my son takes chemo, so he gets a GAC, and we do shorter days. I am walking the parks now, but it's very reduced compared to what would be considered normal. When I was not doing as well as I am now and we went, I found others on this board whose fibro felt better at Disney. I think it's the excitement and joy of being there and the chemical changes in the brain that accompany those feelings.

My WDW tips are:
Rent an ECV OFF SITE
Sleep in if you're stiff in the mornings
Take whatever makes you feel better, and don't be shy about taking what
you need in the park. My son who is on chemo takes a pillow to sit
on because of his hip pain (arthritis and fibro).
Nip pain in the bud fast. If you start hurting, you know it's only going to
get worse, so do something about it. I rarely take vicodin, but I have
make sure I have it and migraine meds with me at all times in the parks.
Be careful of mixing ECV driving and strong medications.
Accept you'll go at a slower pace and not be a Disney commando. Savor it.
Break up days in the parks with relaxation days.
Park the ECV and walk a little to reduce stiffness.
If you really start feeling unwell, you can go to First Aid and lie down in a
dark, quiet room for a bit while your family enjoys some attractions.
It might help to have minor attractions in mind in each park just in case.
We had to do this when a kid got a migraine right after we got to AK.
Wear sunglasses - because of the glare from the sun and the glares
from people who don't understand about hidden disabilities.