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#196345 - 01/31/11 07:40 AM Going from bedridden to an active lifestyle?
msquared Offline
First time visitor

Registered: 01/31/11
Posts: 1
After 5 years of constant pain, my girlfriend has finally been diagnosed with AS. She is 25 years old and has been suffering for so long now that it's nice to finally get a diagnosis. She has been on so many different medications with pretty much zero positive results, but will get to go on Enbrel soon. I am hoping this will provide her some much needed relief.

She is pretty much in constant pain all day every day, although some days may be a little better than others. She can barely walk - on good days she may manage to make it about a half mile at a very slow pace. Otherwise, she is mostly confined to the couch. Just going to the grocery store can be difficult for her.

She does not seem to have flares. The pain has been very consistant for years now. We recently bought an elliptical and she can go on it for about 10 minutes with zero resistance. I am so happy that she has found a way to exercise again, even though it's only in short bursts.

I am a very active person. I run marathons, hike, snowshoe, play soccer, and am constantly outdoors. I would love for my girlfriend to be able to share in these activites with me someday. Is that even possible? I have read about people with AS who are able to run, play sports, etc, but my girlfriend cannot even walk around the block. I just cannot ever picture her being active again. I do not expect her to ever run a marathon, but if she is someday able to take a nice slow jog in the park or go on a hike with me, that would make me happier than you can imagine.

Has anyone here gone from being in extreme pain and confined to the couch to being active? Any stories, advice, etc, would be great. I am trying my best to be as supportive as possible with her.

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#196351 - 01/31/11 08:14 AM Re: Going from bedridden to an active lifestyle? [Re: msquared]
Roqufort Offline
Registered Visitor

Registered: 05/28/08
Posts: 1160
Loc: Texas
hi, and welcome.

I had a very similar lifestyle as your girlfriend. I can keep the house clean most of the times, grocery shopping, well, i can do it now, but I have also learned to go slow, and make smaller trips, more often.

I can take a walk, IF I go slow, and it isnt more than 1 mile. BUT, i can ride a sitting style bike much easier. What may be something you can think of is not... will she be able to do what I do,... rather, what can she do, and still be at my side.

Hiking for me isnt out of the question, but it would have to be slow, and take breaks. Jogging no, but riding a bike, or rollerblading, sure.

This is just me, but it gives you an idea, I know a lot of people on these forums are pretty active.

Your a good man for looking at these ideas, and caring so.

_________________________
Carrie
Retired Navy Wife, 43 / mother of 5, Fort Worth, Texas
Remicade, Norco, lunesta, buspar, Folic Acid, MTX

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#196353 - 01/31/11 08:21 AM Re: Going from bedridden to an active lifestyle? [Re: msquared]
jewelz Offline
Registered Visitor

Registered: 09/27/07
Posts: 1545
Loc: Wisconsin
Wow, I'm not really sure how to take your post?

First, you need to realize that there are mild to severe forms of this disease. Women suffer alot more (many times) due to the fact that they are women and this is supposedly a "man's disease". Also, women have ALOT more involvement with this disease too - they have it where it affects other areas than just the back.
I'm glad she finally got Dx'd. I too was very bad off, in a scooter and lots of pain as your girlfriend is. Then I started remicade and mtx and steroids (which are dangerous) and am better. Can I run, absolutely not. Can I go for a walk - no. Can I make dinner now and go to the grocery, yes. Can I vacuum, yes, some days.
My personal opinion, which will differ from yours - is that she is in a constant disease flare right now. When you are in extreme pain, which it sounds like she is - she shouldn't be exercising because it will damage her joints/tendons/connective tissue more. And understand that any damage that has been done so far from the disease, is permanent and will cause her pain as damage does.
You speak of your happiness, which is why I'm not sure how to take your post. So, I'm just going to say - that for me, I have very active mod-severe AS. I may never get to working out like I used to but I realize that my life has changed - forever. This is the new normal and I accept that. I suggest that you discuss what her ner normal is going to be with her rheumy. That way you both have realistic expectations for HER and not what you've read about other people. This disease is very individual.

Obviously, this is just a snap shot of what this systemic disease does to a person. And opinions vary on this site as much as the disease varies in person to person. If you want to know more (not what is read on WEB MD - but actual reality) you should read about what people experience on this site. The horrible fatigue, the pain, the tendon and muscle problems, the headaches, the SI joint pain, being unable to lay or sit or stand. I could go on and on....

I wish her all the luck in the world.

Jewelz



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#196354 - 01/31/11 08:41 AM Re: Going from bedridden to an active lifestyle? [Re: Roqufort]
asgirl Offline
Registered Visitor

Registered: 01/12/11
Posts: 397
Loc: Kentucky
I have learned that riding a stationary bike, using an elliptical, and doing gental yoga, as well as somthing called yamuna body rolling all help to ease pain, and keep me from getting too sedentary.

Once you begin to loose muscle tone, it is difficult to get it back. Especially if weights and resistance exercises are too much for her. If she has been mostly sedentary for five years then she might want to check into PT once she gets on the meds, or even before. If she sees a reduction in pain, she might think she can jump right back into things, and over do it. But if she takes it slowly, and begins to rebuild her body, she will be able to tell you what she can and can't do. Once she gets a good foundation, she might want to check out a good yoga class/studio. Hot Yoga, gental yoga, and yoga for beginners are good classes to start with. Tell her to check out a studio with certified instructors. Many times you can find instructors trained in physical therapy, sports medicine, and theraputic yoga, who will sit down with her and help her devise a routine that she can do, and allow her to expand on it as she becomes able. Start slow, and if you have been in this for 5 years, you will most likely be able to tell if she is pushing too hard, even if she doesn't tell, you probably know her signs of pain. Be patient, and caring, and let her know that you want to help her get back to being herself.

Also basic home gym equipment such as a stability ball, yoga mat, stability blocks, straps, resistance bands and hand weights are all relatively inexpensive, and make it easy to perform PT exercises at home as well.

Keep being the kind and caring boyfriend it sounds like you are, and talk with her about active things she wants to do or enjoys doing and look into those as ways to be active together.

Good luck!!
_________________________
AS Dx'd Feb'11 symptoms for 2-3 years
GERD & IBSD 10+ years
Asthma 25+ years
Spondylolisthesis 2+ years
Hypersomnia

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#196359 - 01/31/11 09:07 AM Re: Going from bedridden to an active lifestyle? [Re: asgirl]
seekonk Offline
Registered Visitor

Registered: 12/06/10
Posts: 1254
Loss of condition is very easy and it is unfortunate because it really makes things worse.

Now that she has a diagnosis, you could help advocate for her to get on medications that can make a difference to her inflammation, and it is really important also to manage the pain better than it has been so far.

Then, start slow. If she can only walk 20 paces, that's fine, but try to encourage her to get up and walk those 20 paces every hour, then every half hour, then maybe increase a little, and so on. But she should not be doing things that cause overwhelming pain, which is why managing the pain and inflammation is probably the first step.


Edited by seekonk (01/31/11 09:09 AM)
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#196366 - 01/31/11 10:15 AM Re: Going from bedridden to an active lifestyle? [Re: seekonk]
cemc Offline
Registered Visitor

Registered: 01/15/10
Posts: 2929
Loc: UK
Its really good you have come here to this site and started asking questions that might help you stay close to your girlfriend. I'm not sure you are going to get any really concrete answers though, especially if you are looking at her returning to a "normal" level of activity. Yes, now she has the diagnosis things are going to change and hopefully change a lot for the better once she gets onto good treatment that knocks the inflammmation. Just be there with her, and keep on enjoying her company in whatever ways you can - let her lead the way. There are also definitely some ways of exercising that are a lot easier. Like her, I find an elliptical machine an awful lot easier than a treadmill. A recumbant bike (either stationary or a road version) is also great. As others have said, its not about whether she can do the things you do, its about whether you can find things to do WITH her. If both of you enjoy outdoor stuff, then there will be ways of doing things together, even if its a bit of a compromise, like you jogging alongside her on a recumbant bike. Check out the AS stretching exercises too - that might be something you can do together - you as a prelim to going for a run, and her as part of her regular self help programme.

You will have to wait and see. Do give a bit of encouragement to help her get her mobility back a bit, but don't push too hard. One thing all of us here know is just how hard it can be to make other people aware of how the pain of AS is affecting us, even when we don't look too bad. Check out the spoon theory too.
_________________________
Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares

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#196394 - 01/31/11 01:00 PM Re: Going from bedridden to an active lifestyle? [Re: msquared]
diehardhusky11 Offline
Registered Visitor

Registered: 05/01/10
Posts: 1727
Loc: Seattle, Washington, USA
Originally Posted By: msquared
Has anyone here gone from being in extreme pain and confined to the couch to being active? I am trying my best to be as supportive as possible with her.


Yes.

Total bedridden for 2 months in April to June 2010 >>>

to walking 5 miles a day today and other activities due to Enbrel (it took 8 weeks for it kick in).

Hang in there - asking on here shows that you deeply care for her. Wish we had more people like you.

H.
_________________________
1998-2004 Rheumatoid Arthritis, remission 2004-2010, March 2010 to May 2014 (RA, AS, Inflammatory Arth, PsA) Enbrel user-use 25 mg pre-mixed 3x a week.(pre-mix has no latex)(Allergic to "Sure Click Enbrel"-has latex) Remicade June 2014 to current (Grandfather had AS, PsA) "We will intuitively know how to handle situations which used to baffle us."

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#196400 - 01/31/11 03:04 PM Re: Going from bedridden to an active lifestyle? [Re: diehardhusky11]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6074
Loc: New York
There isn't one pat answer. It doens't help that it can take us a lot longer to get diagnosed (and thus treated). If she is getting treatment early enough, so there isn't very much damage--yes. Being active is very important for spondys ONCE there is a treatment plan.

I was almost bedridden and on Enbrel--I was a Christo Monitor for 7 days straight. That is being on my feet all day AND jumping up and down. I did too much and was almost bedridden again. hahaha.

Unfortunately, I went so long without treatment that it didn't work for long.

Give her a chance, it is sometimes harder for us after the thrill of diagnosis.

Anna
_________________________
Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#196405 - 01/31/11 04:45 PM Re: Going from bedridden to an active lifestyle? [Re: Banana]
nisey Offline
Registered Visitor

Registered: 10/30/08
Posts: 1425
Loc: PA
I was nearly bedridden at the time of my diagnosis. With Enbrel and Methotrexate and diclofenac, I am fairly active but have enough damage that there are things that I will never be able to do again. I can walk short distances as long as the land is flat. I can ride a stationary bike for 10 minutes with minimal resistance. I do the stretches my pt gave me. (Some he wanted me to do are impossible.) It is different for everyone. I have to rest during the day in order to keep up with my kids. I have learned to be a whole new person. The person I am now often has to figure out different ways of doing things and asking others for help when I need it. Give your girlfriend time to find out who she is now. She won't know her capabilities for a while yet. Keep urging her and try to be part of her program. I always enjoy it more when I have a "workout" buddy. My kids are great. They never laugh at how little I can do.

Blessings,
Nisey
_________________________
It is what it is!

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#196411 - 01/31/11 07:34 PM Re: Going from bedridden to an active lifestyle? [Re: nisey]
LisaNR Offline
Registered Visitor

Registered: 01/28/10
Posts: 932
Loc: Houston, TX
Well, I bet a nice back rub would make her happier than she could imagine. I can tell you from experience, I will never run or jog again. That does not mean I can not live life. That is me. Your girlfriend may be different. Treatment is different for everyone as is this disease different for everyone. No one person's experience is the same. It is great you want to be supportive. I am worried though that your expectations are too high?

If she does any exercise right now it should only be with approval from her doctor - Rhuemy and most likely would involve Physical Therapy in a pool perhaps?


Edited by LisaNR (01/31/11 07:35 PM)
_________________________
LisaNR

Undiff. Spondylitis, Possible Fibromyalgia, IBS, GERD,
Chronic Gastritis, Auto Immune Hashimoto's (Thyroid)
Poly Cystic Ovarian Syndrome, Insulin Resistance
High Cholesterol, Gallbladder removed, Hidradinitis Suportiva
B-12 Deficient, Migraines, TMJ, Rhinitis, Vitamin D Deficient
Generalized Anxiety Disorder (Spondy is stressful!)

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