Disney with Fibromyalgia

[DisneyGirl201017]

First off I'm so sorry if this ends up being super long! Last Thursday I was diagnosed with fibromyalgia, I'm eighteen if it helps. My family had a Disney trip planned for the last week of August before I was diagnosed. I've been a little worried about my ability to walk to the parks and do the attractions, has anyone done Disney with Fibromyalgia? I was prescribed savella to take; I have only been taking it four days so I'm not sure how it helps my symptoms yet. Has anyone done Disney on Savella? Does it help? Do you have to rent an ECV to get through the week? Would it be better for everyone if we did rent one? If anyone has any general tips for tackling Disney with fibromyalgia I would definitely appreciate it. Thank you so much for your time and patience!

 

[North of Mouse]

I sympathize completely I have had fibromyalgia for 26 years, but was only finally diagnosed 15 years ago. I refuse to take anything except a mild dose of diazapam to help me sleep and when I have to Advil. The Rheumatalogist has told me several times that there are things available to help me (including sleeping pills) but I will not start them unless I absolutely have to. And just a word of advice (because I know how I hurt and can hardly get moving in the morning). The very best thing you can do for it is MAKE yourself keep moving. My Dr. told me that also. I am never without pain, but I refuse to give in to it and do everything I have always done, just sometimes slower. Some days (very few) I let myself have a "pity party" but I limit them LOL. I have watched a friend "give in" to her aches and pains and she practically stays in bed I made up my mind "early" that I have a lot of life to enjoy so it's mind over matter sometimes and I WILL not let it ruin my enjoyment of life. I garden, hike and exercise every day. You cannot "get over it" because there is no cure. But, you, yourself, can take control of it, or let it control you. I hurt so bad I could cry, then walk out into a room with family and friends and talk and smile,try to get my mind off it as much as possible. There are meds available, but I don't like side effects of most of them. Like I say, today is pain #8-10 - had a VERY bad night, but I'm up and doing things slowly. Tomorrow may be #2-3 on pain scale - never know. We are going to the F&G show at Disney in April and I will do all the walking and picture taking I can. I do NOT want to ever revert to a scooter if at all possible (I also do not know the future ). It's not a death sentence and I "feel" your pain, but for the most part you CAN live a normal life, IF you don't give in to it. Stay strong, keep active, stay healthy, keep normal weight and trust me you will be able to deal with it. Take care

 

[DisneyGirl201017]

I sympathize completely I have had fibromyalgia for 26 years, but was only finally diagnosed 15 years ago. I refuse to take anything except a mild dose of diazapam to help me sleep and when I have to Advil. The Rheumatalogist has told me several times that there are things available to help me (including sleeping pills) but I will not start them unless I absolutely have to. And just a word of advice (because I know how I hurt and can hardly get moving in the morning). The very best thing you can do for it is MAKE yourself keep moving. My Dr. told me that also. I am never without pain, but I refuse to give in to it and do everything I have always done, just sometimes slower. Some days (very few) I let myself have a "pity party" but I limit them LOL. I have watched a friend "give in" to her aches and pains and she practically stays in bed I made up my mind "early" that I have a lot of life to enjoy so it's mind over matter sometimes and I WILL not let it ruin my enjoyment of life. I garden, hike and exercise every day. You cannot "get over it" because there is no cure. But, you, yourself, can take control of it, or let it control you. I hurt so bad I could cry, then walk out into a room with family and friends and talk and smile,try to get my mind off it as much as possible. There are meds available, but I don't like side effects of most of them. Like I say, today is pain #8-10 - had a VERY bad night, but I'm up and doing things slowly. Tomorrow may be #2-3 on pain scale - never know. We are going to the F&G show at Disney in April and I will do all the walking and picture taking I can. I do NOT want to ever revert to a scooter if at all possible (I also do not know the future ). It's not a death sentence and I "feel" your pain, but for the most part you CAN live a normal life, IF you don't give in to it. Stay strong, keep active, stay healthy, keep normal weight and trust me you will be able to deal with it. Take care

Thank you so much for this!!! I am recently diagnosed so I'm sure it's a lot of trial and error to decide what works best for me. My doctor has me waiting two weeks until I start walking and stretching everyday. So hopefully I can start soon and work my way up to walking, which should help with getting in shape for all the walking at Disney! Thanks so much once again, it's so helpful to talk with someone who has lived with this and has figured out how to live a happy normal life!

 

[North of Mouse]

You're so welcome, DisneyGirl Some days I wake up and feel like I've been run over by a "Mac Truck", other days like the flu, but trust me you'll get into a routine and it will become part of your life. Attitude has so much to do with it, and my mom always taught us when life gives us lemons, just make lemonade Not trying to make light of it sweetie, but you'll do just fine. Just keep that chin up! I worried after I posted that I had given "too much" info, but really just wanted to show you that you DO have a great life ahead in spite of the diagnosis. At least they know more about it now - I had many doctors at first (started after I had a stressful birth of our last child) infer it was "all in my head" or I was a hypochondriac. They didn't outright say it, but I got the drift!! It would upset me so much because I'm not a complainer, but anyway you enjoy your trip, and the very best to you!

 

[DisneyGirl201017]

You're so welcome, DisneyGirl Some days I wake up and feel like I've been run over by a "Mac Truck", other days like the flu, but trust me you'll get into a routine and it will become part of your life. Attitude has so much to do with it, and my mom always taught us when life gives us lemons, just make lemonade Not trying to make light of it sweetie, but you'll do just fine. Just keep that chin up! I worried after I posted that I had given "too much" info, but really just wanted to show you that you DO have a great life ahead in spite of the diagnosis. At least they know more about it now - I had many doctors at first (started after I had a stressful birth of our last child) infer it was "all in my head" or I was a hypochondriac. They didn't outright say it, but I got the drift!! It would upset me so much because I'm not a complainer, but anyway you enjoy your trip, and the very best to you!

I've been getting the flu feeling; I thought I was actually getting sick! Glad you cleared that up Not too much info at all! Trust me it was just what I needed after reading too many horror stories on the internet. I had doctors telling me that same thing at first, and then my college adviser when I went to try and get some help with the work load. Thanks so much again for everything you definitely made my day better! The very best to you and your family as well!!!

 

[catra121]

I do not have Fibromyalgia...but I do have RSD which another chronic pain condition that can be very debilitating. I have been to Disney with it and I do have difficulty walking. I now have to use a walker (the kind with 4 wheels and a seat) but when I went to Disney I didn't need it yet. I chose not to use an ECV when I went...but this is a very personal decision. Walking...making myself walk...is good for me and immobilizing is not so good so I didn't want to put myself in a position of actually making myself worse. Plus...having spend a good amount of time in a wheelchair I actually find that the bumps, vibrations, jerks, etc actually aggravate my condition.

BUT...I did plan the trip around my disability. It was actually me and my mom who went (she has rheumatoid arthritis really bad so she has limited mobility as well). I did a lot of planning before the trip and we agreed going in that we were not going to push ourselves too hard...that we would stop and smell the roses...and that we would rest when we needed to. We planned all table service meals so that we could sit and rest throughout the day (only at the parks we were going to be at anyway so not extra travel or running around). We gave ourselves plenty of time to get places. If lines were long we got fastpasses and just sat and rested until our time came up. We got our pictures taken with the characters and did some stuff like that which we hadn't done in years.

I think that you need to do what is best for you. If you need the ECV then get it and don't worry about any prejudices some people have against them. If you don't want to get one then there are other options. You can take it easy during your trip and go slow like my mom and I did, you could rent or buy a rolling walker like I use that has a seat so that you can sit and rest even when you are in line, you can take breaks in the afternoon back at the hotel if you need to, etc.

As far as savella...they had me on that for a while. And when I was at Disney I was on a bunch of other meds. I have since gone off all but one because they just weren't helping my pain enough for me to want to take them and risk any long term damage. Just make sure that you are aware of any side effects before you go...if they make you loopy or out of it then I would recommend against the ECV (wouldn't want you driving under the influence). Also be wary of any interactions between meds and make sure the docs don't put you on more than one at a time. If you experience any strange side effects report them to your doctor right away. Savella was one of the meds that contributed to me getting seratonin syndrome last year and I know from experience how scary it can be when your meds actually make you worse. But I know everyone is different and reacts to meds differently so just make sure you are keeping track of any new symptoms and taking care. I hope it helps.

 

[North of Mouse]

DisneyGirl, I was not going to post again until I read this PP account. I sympathize so much with her condition because it is far worse than what fibromyalgia is - it's definitely comparing "apples to oranges". I am not making light at all as I looked it up and read about it. But it involves nerves, joints, muscles whereas fibro is mostly muscles - the best way to explain it is like arthritis of the muscles instead of the joints. Try to look some of the fibro info up on the web and it will take away some of your fear. By itself, I've never seen or heard of anyone ever having to use walkers or scooters (some people could have combined fibro with other things that would cause them to need one). If (a big if), you will faithfully exercise (not hard exercise - I use Leslie Sansone's cardiac walking inside dvd - it's a 30min. "real" workout - not just walking) keep your weight normal, and keep busy and involved,you will manage fine ( not saying you will not hurt all over though ). I have a wonderful Dr. that has helped so many people. Read on the web from Mayo Clinic or some of the well known institutions about it.

 

[DisneyGirl201017]

I do not have Fibromyalgia...but I do have RSD which another chronic pain condition that can be very debilitating. I have been to Disney with it and I do have difficulty walking. I now have to use a walker (the kind with 4 wheels and a seat) but when I went to Disney I didn't need it yet. I chose not to use an ECV when I went...but this is a very personal decision. Walking...making myself walk...is good for me and immobilizing is not so good so I didn't want to put myself in a position of actually making myself worse. Plus...having spend a good amount of time in a wheelchair I actually find that the bumps, vibrations, jerks, etc actually aggravate my condition.

BUT...I did plan the trip around my disability. It was actually me and my mom who went (she has rheumatoid arthritis really bad so she has limited mobility as well). I did a lot of planning before the trip and we agreed going in that we were not going to push ourselves too hard...that we would stop and smell the roses...and that we would rest when we needed to. We planned all table service meals so that we could sit and rest throughout the day (only at the parks we were going to be at anyway so not extra travel or running around). We gave ourselves plenty of time to get places. If lines were long we got fastpasses and just sat and rested until our time came up. We got our pictures taken with the characters and did some stuff like that which we hadn't done in years.

I think that you need to do what is best for you. If you need the ECV then get it and don't worry about any prejudices some people have against them. If you don't want to get one then there are other options. You can take it easy during your trip and go slow like my mom and I did, you could rent or buy a rolling walker like I use that has a seat so that you can sit and rest even when you are in line, you can take breaks in the afternoon back at the hotel if you need to, etc.

As far as savella...they had me on that for a while. And when I was at Disney I was on a bunch of other meds. I have since gone off all but one because they just weren't helping my pain enough for me to want to take them and risk any long term damage. Just make sure that you are aware of any side effects before you go...if they make you loopy or out of it then I would recommend against the ECV (wouldn't want you driving under the influence). Also be wary of any interactions between meds and make sure the docs don't put you on more than one at a time. If you experience any strange side effects report them to your doctor right away. Savella was one of the meds that contributed to me getting seratonin syndrome last year and I know from experience how scary it can be when your meds actually make you worse. But I know everyone is different and reacts to meds differently so just make sure you are keeping track of any new symptoms and taking care. I hope it helps.

I am so sorry to hear you have RSD, but I am glad you don't let it slow you down! That's what my mother and I had talked about just taking things at my own pace. Even if I could walk the morning and maybe had to rent a wheelchair for the afternoons. I haven't been taking it a week yet, but I'm watching really close. The doctor warned of a lot of people having mood problems taking Savella, but I haven't notice anything yet. But I was on Daypro for a whole month before I broke out in hives and had to be taken to the ER because my throat was starting to close! Funny how the things that are supposed to make us better, can hurt us even more! Thank you so much for all the information it defiantly helped me see it's okay to take it slow.

 

[katrina1122]

Welcome fibromite! I've had it for as long as I can remember, all the way into early childhood, but wasn't diaganosed until 25, i'm now 38.

Savella helped me, but my normally normal to low blood pressure was through the roof in 2 weeks, so high my dr almost put me on blood pressure meds, so keep an eye on it. It's a fairly common side effect of savella.

Pain mgmt is all about trial and error. Read online and there are some great books out there too. For me water therapy and stretching are the best things. I'm also on a sleep med and nucynta which is a narcotic for pain as needed. At first I took it alot until things were under control, now I can go weeks without it until I hit a flare.

Fibro is no fun, but being your own advocate is the best thing for you.

As to wdw. I've done it several times with fibro and always barely made it through the week. We are going in Nov. I am renting an ecv, not just for the fibro, but for severe ankle pain from an ankle reconstruction 2 years ago. While it doesn't hurt all the time, that much walking would have me crawling within a day or two.

I say rent the ecv. If you don't need it one day leave it in your room, you can always go back (or send someone back) for it. It's cheaper to rent from an outside company and that way you can take it thru your resort and dtd as well.

Feel free to ask questions. I'm sure you have a ton and feel better. You now know why you feel the way you do. That's the first step!

 

[DisneyGirl201017]

DisneyGirl, I was not going to post again until I read this PP account. I sympathize so much with her condition because it is far worse than what fibromyalgia is - it's definitely comparing "apples to oranges". I am not making light at all as I looked it up and read about it. But it involves nerves, joints, muscles whereas fibro is mostly muscles - the best way to explain it is like arthritis of the muscles instead of the joints. Try to look some of the fibro info up on the web and it will take away some of your fear. By itself, I've never seen or heard of anyone ever having to use walkers or scooters (some people could have combined fibro with other things that would cause them to need one). If (a big if), you will faithfully exercise (not hard exercise - I use Leslie Sansone's cardiac walking inside dvd - it's a 30min. "real" workout - not just walking) keep your weight normal, and keep busy and involved,you will manage fine ( not saying you will not hurt all over though ). I have a wonderful Dr. that has helped so many people. Read on the web from Mayo Clinic or some of the well known institutions about it.

I looked up as well, and I agree with you. I have an appointment with a
Rheumatologist in May so hopefully she can answer my questions. I plan to start walking soon; I don't want to push myself that's the main things I've read so far is to start slow! Thanks so much for all the great advice you have given me!!

 

[DisneyGirl201017]

Welcome fibromite! I've had it for as long as I can remember, all the way into early childhood, but wasn't diaganosed until 25, i'm now 38.

Savella helped me, but my normally normal to low blood pressure was through the roof in 2 weeks, so high my dr almost put me on blood pressure meds, so keep an eye on it. It's a fairly common side effect of savella.

Pain mgmt is all about trial and error. Read online and there are some great books out there too. For me water therapy and stretching are the best things. I'm also on a sleep med and nucynta which is a narcotic for pain as needed. At first I took it alot until things were under control, now I can go weeks without it until I hit a flare.

Fibro is no fun, but being your own advocate is the best thing for you.

As to wdw. I've done it several times with fibro and always barely made it through the week. We are going in Nov. I am renting an ecv, not just for the fibro, but for severe ankle pain from an ankle reconstruction 2 years ago. While it doesn't hurt all the time, that much walking would have me crawling within a day or two.

I say rent the ecv. If you don't need it one day leave it in your room, you can always go back (or send someone back) for it. It's cheaper to rent from an outside company and that way you can take it thru your resort and dtd as well.

Feel free to ask questions. I'm sure you have a ton and feel better. You now know why you feel the way you do. That's the first step!

I love that! Fellow Fibromite!! What are some of the symptoms of high blood pressure? That's something I defiantly don't need, we have a high family history of high blood pressure. Is water therapy like swimming? We have a pool and my doctor told me it would be a great low resistance exercise or just to soak in the cool water may help.
I never thought of renting from an outside company, that's a good idea, thank you!
I figured when we get there if I'm really hurting, I'll rent one, if not then I'll just take it slow and manage. But I won't make myself and my family miserable but that's still a few months off so hopefully I can figure out what works for me by then! Thanks so much for the great advice! I hope your ankle gets better and the fibro stays under control!! Have a great trip in Nov.!

 

[dclfun]

My SIL has fibro and does twice a day stretching and yoga to help her feel better. She lives a normal life but does have to do the exercises and take a daily walk. I would play it by ear during your trip to WDW but definitely consider the possibility of renting an ECV or having a wheelchair. Another friend who has had both knees replaced rents a manual w/c and walks with it, then sits in it when she's had enough walking, letting her DH push her. There is no reason you should suffer or make your condition worse by trying to walk throughout the parks. I'm glad you have a diagnosis and hope your new medication is helpful!

 

[DisneyGirl201017]

My SIL has fibro and does twice a day stretching and yoga to help her feel better. She lives a normal life but does have to do the exercises and take a daily walk. I would play it by ear during your trip to WDW but definitely consider the possibility of renting an ECV or having a wheelchair. Another friend who has had both knees replaced rents a manual w/c and walks with it, then sits in it when she's had enough walking, letting her DH push her. There is no reason you should suffer or make your condition worse by trying to walk throughout the parks. I'm glad you have a diagnosis and hope your new medication is helpful!

Thanks so much! Would you happen to know where I could find a manual w/c I don't think I've ever seen one, and I would love to check one out!

 

[DisneyGirl201017]

I hate to be such a bother, but I just realized we were planning on trying to do at least one water park and Disney Quest, should I try to walk these? I know if I rent an ECV offsite or bring my own manual w/c I can use that at DTD, but would I be able to bring it into Disney Quest? What about the water parks? We have never been to TL, and were considering trying this one. Any ideas? Everyone has been so helpful and wonderful so far, just thought I'd ask!! Thanks so much!

 

[LindaBabe]

I hate to be such a bother, but I just realized we were planning on trying to do at least one water park and Disney Quest, should I try to walk these? I know if I rent an ECV offsite or bring my own manual w/c I can use that at DTD, but would I be able to bring it into Disney Quest? What about the water parks? We have never been to TL, and were considering trying this one. Any ideas? Everyone has been so helpful and wonderful so far, just thought I'd ask!! Thanks so much!

I have fibro too, and rent an ecv from an off site company for park touring, but I haven't needed to use it for Water Parks - MUCH smaller and less walking, and you'd need to stay on paved paths with it which would be limiting. Do you need a chair for your everyday life? If you do, then you'll want it that way at Disney. If you don't, then likely the ecv for the parks will likely be sufficient.

My best advice for life - keep moving. Water exercises if you can find a place where it's available. Core exercises. Limit intake of carbs and sugar. When you feel a flare coming, don't try to ride out the pain - medicate early and enough with whatever the doc tells you - there is no virtue in suffering.

good luck!

 

[katrina1122]

I love that! Fellow Fibromite!! What are some of the symptoms of high blood pressure? That's something I defiantly don't need, we have a high family history of high blood pressure. Is water therapy like swimming? We have a pool and my doctor told me it would be a great low resistance exercise or just to soak in the cool water may help.
I never thought of renting from an outside company, that's a good idea, thank you!
I figured when we get there if I'm really hurting, I'll rent one, if not then I'll just take it slow and manage. But I won't make myself and my family miserable but that's still a few months off so hopefully I can figure out what works for me by then! Thanks so much for the great advice! I hope your ankle gets better and the fibro stays under control!! Have a great trip in Nov.!

I don't know what the symptoms of high blood pressure are. I just happened to be at the dr's office for a check on my ankle surgery as I was 2 weeks post of and they took my blood pressure and found it. If you are worried about it, just go to the drug store for weekly checks for the next few months and keep a log. If it starts to go up, it's probably the savella.

Water therapy is like aerobics in the water, no impact, but you can get your heart rate up some and do some great stretching. You said the dr mentioned cool water, that's surprising, most of us can't handle cool to cold, we need warm water. I use the heated therapy pool at the gym. The regular pool is too cool for me which makes me tense up which just causes more pain.

Renting can be $40ish a day I think, but I was quoted about 170 for 8 days to rent from various outside companies. You can rent ecvs and manual chairs from most places. Personally, for peace of mind, I'd spend the money. Plus, if you start hurting later in the day and go to rent one, they may be all rented and you'll be out of luck. This happened to me at Sesame Place a few years ago. I ended up sitting on a lounge chair all evening while everyone else went and had fun and took turns babysitting me.
The next time we went I pre-rented one directly from Sesame Place (WDW doesn't do this). I used it off an on, the rest of the time others took turns riding it to just save their feet some and it makes a great place to carry your phone, camera, drinks, etc to boot. I made it the whole day and didn't want to leave early like everyone else, lol.

 

[DisneyGirl201017]

I have fibro too, and rent an ecv from an off site company for park touring, but I haven't needed to use it for Water Parks - MUCH smaller and less walking, and you'd need to stay on paved paths with it which would be limiting. Do you need a chair for your everyday life? If you do, then you'll want it that way at Disney. If you don't, then likely the ecv for the parks will likely be sufficient.

My best advice for life - keep moving. Water exercises if you can find a place where it's available. Core exercises. Limit intake of carbs and sugar. When you feel a flare coming, don't try to ride out the pain - medicate early and enough with whatever the doc tells you - there is no virtue in suffering.

good luck!

Do you have a certain rental company that you like to use and have had a good experience with? Thank you so much for the advice!

 

[DisneyGirl201017]

I don't know what the symptoms of high blood pressure are. I just happened to be at the dr's office for a check on my ankle surgery as I was 2 weeks post of and they took my blood pressure and found it. If you are worried about it, just go to the drug store for weekly checks for the next few months and keep a log. If it starts to go up, it's probably the savella.

Water therapy is like aerobics in the water, no impact, but you can get your heart rate up some and do some great stretching. You said the dr mentioned cool water, that's surprising, most of us can't handle cool to cold, we need warm water. I use the heated therapy pool at the gym. The regular pool is too cool for me which makes me tense up which just causes more pain.

Renting can be $40ish a day I think, but I was quoted about 170 for 8 days to rent from various outside companies. You can rent ecvs and manual chairs from most places. Personally, for peace of mind, I'd spend the money. Plus, if you start hurting later in the day and go to rent one, they may be all rented and you'll be out of luck. This happened to me at Sesame Place a few years ago. I ended up sitting on a lounge chair all evening while everyone else went and had fun and took turns babysitting me.
The next time we went I pre-rented one directly from Sesame Place (WDW doesn't do this). I used it off an on, the rest of the time others took turns riding it to just save their feet some and it makes a great place to carry your phone, camera, drinks, etc to boot. I made it the whole day and didn't want to leave early like everyone else, lol.

Thank you! I never thought of going to a drug store to have it tested. I was wondering how I was going to check it out! My parents both thought the same thing about the water temperature, I've never really had an experience with things like this since I'm only 18, but they found it funny that cool water would be more soothing that hot. I was looking in the area for some water therapy; sadly I live in a rural area so I doubt I'll be able to find a class. Thankfully we have a pool and I'm sure the wonderful World Wide Web will have some exercises I can try. Thank you so much for the advice! You were so helpful!

 

[NJOYURLIFE]

I have fibro, among other things. I think alot will depend on your group. For the longest time, I refused to use an ecv. I would have a day at the park and then need 2-3 days to recover from that one day. I was trying to keep up with my 3 children. It wasn't until I did a trip with my mother. She was the one who convinced me to get one. The key for me has always been to pace myself, and I wasn't doing this at Disney WITH my children. I did do a trip alone with my husand once and we decided to take a wait and see approach. Since it was just the two of us, I was able to take my time, stop for frequent breaks, etc. I was tired, but not wiped out. I was able to do the trip without the ecv.

You know your body and I don't think that there is a "one size fits all" answer regarding using ecv's. I have used Apple Scooters and have had no problems with them. They drop it off at bell services the day I arrive and I leave it at Bell Services the day I leave.

 

[mfd25wife]

I also have fibro. The reason we originally started staying onsite was because of it. I needed to be able to leave whenever I started getting miserable. I never wanted to interfere with the rest of the family's vacation and knew I was always just a bus, monorail, or boat ride away from being able to lay down. DH always goes back with me and either reads, swims, or goes to the workout center. I was diagnosed after having viral meningitis 12 yrs ago so we've gone several times since then. I tried Savella, but could not stay on it. It made me extremely depressed. Really. I struggle with muscle spasms and pain as well as connective tissue around the joints. I haven't had to use an ECV or WC except in 2009, but that was when I had broken my neck and ribs. For me, DH just knows that we go at my speed. We go slower than we used to, but we go often enough we now longer feel like we have to do the 100 yard dash everywhere. I do have to resort to pain meds and muscle relaxers at times. I woke up every night with leg and foot cramps before the muscle relaxers. The prescription strength of aleve is 2 (Naprolen, Naproxin) so I try that before I take any pain meds. It will definitely be worse if you don't make yourself move, but I won't lie. Sometimes, it is really hard. You'll hear that it's all in your head, you don't look sick, etc. I even had an aunt tell me mine must not be too bad because I don't talk about the pain as much as she's heard some others do. My answer was, "Why remind myself constantly that it hurts?" Yes, you'll hurt all the time, it will just be how intense is it. Sometimes, you just can't function. Sometimes, you just deal with it. I learned from a friend who has dealt with arthritis since he was in his 20's. He runs, bikes, does triathalons. I asked how does he do it when I know he has to be hurting so badly. His answer was that he can lay on the couch and hurt or he can move and be healthier and hurt but hurt less.