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#271271 - 05/06/15 09:43 AM spondy, exercise and weight: please HELP
elenef Offline
Registered Visitor

Registered: 03/25/15
Posts: 99
Loc: Illinois
so, i have been struggling the last year with moderately high pain levels. and as time has gone on, i unfortunately have gained some weight (maybe 15-20lbs). i went from exercising consistently at the gym 4x a week doing cardio and weights to just some stretches and PT exercises that i can tolerate. sometimes I can't tolerate anything.

i have a family trip to Hawaii coming up in 2 months and i am now in the worst physical shape of my life. and at 43, heathy/smart eating isn't enough to lose the weight (i have been trying)---i really need more vigorous physical activity. i have recently been at least trying to increase my walking time (commuting to work) by taking a much longer route and taking the stairs as much as possible. BUT, my body has been reacting angrily and responds with an increase in pain levels of my spondy symptoms (not just general workout soreness--i do know the difference).

oh and did I mention the fatigue? debilitating. which makes it difficult to even go to work let alone exercise.

i am at a loss. this is so upsetting to me that not only am i dealing with being in pain every day from my disease, now i am even more depressed dealing with my flabby body. i know that might sound superficial, but it is actually affecting my confidence and none of my clothes fit etc. and i don't really have the money to buy a new wardrobe either.

i was really looking forward to this family trip and now, i have no way to get back in shape and feel confident for it. i want to feel good about the pictures i am in as they will be lifelong memories to look back at.

any thoughts on how to achieve my goal? i need help.
Female / 43 yrs old
~ Pain started in 2000
~ dx w/Cervical Myofascial Pain Syndrome in 2003
~ dx change to USpA/AS in Feb 2015 (HLA-B27 negative)
Currently taking Gabapentin 300mg/nightly, Meloxicam 15mg/daily, MTX 7.5mg/weekly, Folic Acid 3mg/daily, Biotin 5000mg/daily, and Flexiril & Norco only when absolutely needed.
tried Humira--no success, Enbrel & Cimzia--severe allergic reactions.
started Simponi infusions Jan 2016.

#271287 - 05/07/15 03:26 PM Re: spondy, exercise and weight: please HELP [Re: elenef]
Enyo Offline
Registered Visitor

Registered: 05/06/15
Posts: 2
Loc: Portland, Oregon
I have not worked out for almost 6 months due to the pain. I definitely understand the disappointment that comes from weight gain, losing muscle and your body not being as fit. Since you cant do any strenuous exercise have you ever tried Pilates? It is great for toning and core strength. I started doing Pilates and it does help. it's not always easy, but it also helps decrease my pain. I don't know how helpful this is, but hope you feel better soon and resume some activity before your vacation.

-Pain started in 2007
-dx with Ankylosing Spondylitis November 2012
-HLA-B27 +
-Currently taking Naproxen,Ibuprofen, Flexeril, and Tramadol (only when needed).
-Pain started in 2007
-dx with Ankylosing Spondylitis November 2012
-HLA-B27 +
-Currently taking Naproxen, Ibuprofen, Flexeril, and Tramadol (only when needed).

#271547 - 05/31/15 03:34 PM Re: spondy, exercise and weight: please HELP [Re: elenef]
uplate Offline
Registered Visitor

Registered: 10/13/13
Posts: 33
Loc: Sydney, NSW
I was told by the doc swimming in a heated pool but I find swimming increase my appetite. Personally I find low intensity cardio better than the more hectic routines and I need a much longer warm up and a cool down than I used to. I time when I take my pain meds to fall just before my workout and I had to take more at first till my body got used to the new routine.

Also exercise may not be the best answer for losing weight, generally given the choice between diet or exercise diet is more effective.
Diagnosed with AS in 2013, symptomatic since 1989

#271824 - 07/09/15 11:49 PM Re: spondy, exercise and weight: please HELP [Re: elenef]
ancient Offline
Registered Visitor

Registered: 01/05/11
Posts: 252
Loc: Ill
I am going through the same thing. I work three times a week with my best friend. Watching closely what I do. Longer reps instead of more weight. I decided my goal for now ( I need to loose more #'s ) is to build up endurance because I have been bed ridden so much. And tired all the time. Gradually that got better. Also I'm hoping I won't feel defeated and give up. Right now I can't work out until I get docs ok but I can't wait to get back to it. Love talking with my friend time goes fast. Maybe you could start a group here? We could do it together somehow? Don't give up keeping active is so good for us ! My docs all tell me core strength is so important for us !
diagnosed USpA Nov 2010. Changed to As 2012. Low Vit D
suffered since teenager multiple surgeries.IBS, Migraines, carpal and tarsal tunnel, TMJ, (failed Enbrel& Humira),Started Remicade sept. 2012,Methotrexate,Prednisone,Relafen, Amitriptylin,Gabapentin, Fioricet, Topamax,,Protonix,Amlodipine, Vit. D, Folic acid,

#271954 - 08/11/15 06:46 PM Re: spondy, exercise and weight: please HELP [Re: ancient]
NeC Offline
First time visitor

Registered: 08/07/15
Posts: 1
Loc: New Jersey
I'm in exactly the same boat! And I don't know what to do either. I've been diagnosed since April of 2013 and have slowly but surely exercised less and less since then. All the same reasons- fatigue and after work out pain is unbearable sometimes. I have Always been a very healthy, fit and active person. I've gained 10-15 lbs and feel terrible about my body. As you say, simply eating well is not enough at 48. I keep trying to do some aerobic exercise but my body stops me at every turn . Pilates is great for me! A real savior, but it doesn't shed the lbs.
currently taking: Humira , ibuprofen and trying yet another pill, new Otezla. Had to stop many other pills for various side effects.

#271979 - 08/13/15 06:28 PM Re: spondy, exercise and weight: please HELP [Re: elenef]
Sheep1 Offline
Registered Visitor

Registered: 08/12/15
Posts: 210
Hi all-

I'm newly diagnosed with USpA, but have been dealing with spine pain since 1985 in high school. I was diagnosed with fibromyalgia in 2011, but my new rheumatologist is not sure that I even have fibro...

I've too gained 20 lbs over the last 5 years...

Pilates on a reformer seems to be the best exercise for me. I was taking individual lessons (couldn't keep up with a class), but it got so expensive... Recently I bought an Aeropilates pilates reformer for home. It's not nearly as nice as the one in the pilates studio, but for my home use it's great. I think pilates on a reformer works so well because the spine is stabilized while moving the limbs. I haven't had the reformer long enough to notice much difference. Some days I am only on it for a few minutes, some days not at all, but on my good days, it's nice to have the reformer at home so I don't have to go take a lesson.

Walking had been my main form of exercise for the past 5 years, but it's getting increasingly harder to go the distance and speed I used to...

There was recently a study mentioned in the New York Times about exercising. The study followed two groups of pre-diabetic people, one group exercised continuously for 30 minutes a day, the other group exercised up to 3 times a day for 10 minutes at a time. Both groups lost weight, and interestingly, the group that exercised for the shorter duration had lower blood sugar levels throughout the day. http://well.blogs.nytimes.com/2014/05/14/exercise-snacks-to-control-blood-sugar/?_r=0

That study got me thinking about myself. There are days that I have energy, so I've stated doing little "bursts" of cardio. Nothing crazy- just like stepping in place or side to side with some arm movements- movements that get my heart rate up a little bit but don't cause pain. Sometimes I can only do this for 2 or 3 minutes at a time for a couple of times during the day, some days I am confined to bed and can't do this at all. But other times, I am able to sustain 10 minutes a couple of times a day. Since starting these little "bursts" I've lost about 5 lbs in about 6 weeks. Without any other changes.

Now that I have a confirmed diagnosis, I'm going to try to do more yoga to stretch my spine. I am currently in physical therapy for a knee problem (which the therapist thinks is coming from stiff SI-joints) and she has been also giving me some spine exercises that don't cause pain.

I think like most of you who have responded here, I used to be very active when I was younger, ballet, triathalon training, biking, weight lifting... it's really been depressing over the past couple of decades to get less and less active. It's only recently that I've had a change of mindset- that anything I can do cardio wise, even if it's only a few minutes a day- helps my heart and I'm surprised to see that I've started loosing weight. 10 years ago I would have considered the amount of movement I do in a day now on a good day as a warmup...

Edited by Sheep1 (08/13/15 06:32 PM)
48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009

#272012 - 08/16/15 10:54 PM Re: spondy, exercise and weight: please HELP [Re: elenef]
Adoptapom Offline
Registered Visitor

Registered: 05/05/15
Posts: 8
Hi, I'm absolutely in the same boat, unfortunately. I've been off and on biologics for the last 12 years. I've had the most success with Remicade, but I had shingles and recurring optic neuritis so now Im on Humira. Every year I get taken off them due to some awful infection. Then I lose a bunch of weight. Then...my AS and uveitis flare up terribly and I get put back on a biologic and gain 20 lbs within two months. It sucks.

I'm fed up with this happening again and again. I'm in appalling shape. I'm so frustrated by this happening over again and again. I've got to do something. I need to maintain a workout routine, and stop this cycle once and for all.

Would you guys be interested in making a weight loss/exercise challenge group?

#272400 - 09/29/15 03:44 PM Re: spondy, exercise and weight: please HELP [Re: elenef]
Allicat Offline
Registered Visitor

Registered: 09/28/15
Posts: 13
Loc: MA
Hi I'm new here. Still not sure I belong here but I guess time will tell. One of the main reasons I don't think I have USpa is because I read that exercise is supposed to help but all it does is hurt. I was a workout-aholic prob have/had an eating disorder I was so crazy but over the years I have slowed down and now I'm too the point that I barely workout and when I do I pay for it. It does make me depressed but I try to find the silver lining..... for me it's having more time to do other things... between my cafe and my children I was forcing workouts in. I also tell myself that this is where I'm at in my life, is not my fault, and do what feels right.

#273790 - 03/31/16 03:32 PM Re: spondy, exercise and weight: please HELP [Re: elenef]
nowIknow Offline
Registered Visitor

Registered: 03/30/16
Posts: 58
Loc: Nebraska
I'm also new here and still don't know if I belong but the symptoms all fit. I try and try to get on a regular exercise routine but after about 3 weeks I am thrown into one of my relapses where I am then like a limp rag full of pain. Takes me about a month to recover from that. I am planning on getting my diagnosis first and proceeding from there. I MAY start some easy stretches or short walks outside or on my treadmill. My weight has crept up on me because of the relapses PLUS having bipolar. At down times my own personal treatment to get through it is hot baths, camping out on the couch after work, watching movies and eating junk food. It's all I know how to do for now. Hope to find a solution of losing weight as well.
Yet waiting and pressing in for diagnosis.

Thanks for listening and for your caring support.

Laughter is the best medicine after all.

#275447 - 07/24/16 11:34 PM Re: spondy, exercise and weight: please HELP [Re: elenef]
BellaShade Offline
Registered Visitor

Registered: 12/30/11
Posts: 265
I'm so unfit, I can not explain how unfit I am. I've lost 100 lbs since I turned 50 and still very unfit. I did it all with diet. I'm alone and don't have motivation to do much and have be too fatigued. The last few months I've been on amphetamines forADD and fatigue, but I haven't done anything about my fitness. I had to go off my BCBS, so I lost my Silversneakers. It became a disadvantage plan instead of an advantage plan! The place wirh the pool is a private college full of rich kids. I've lost half of my body weight. Can you imagine what a 53 year old body looks like? Eek!! I wish I could comfortably walka mile and not have my back killing me orhuffing and puffing! I think if I could get my core stronger, I could really get jump started
Diagnosed with AS December of 2011. Neck fused and ligaments calcified. Taking norco, soma, duragesic patch for pain. HLA-B27 positive. Probably Lupus, and Sjogrens. Raynaud's off Humira for now frown 6 months ...we'll see from then smile lovin" live with adderall!! Hehe and hormones hehe

#277652 - 03/30/17 05:41 PM Re: spondy, exercise and weight: please HELP [Re: elenef]
Kailey Offline
First time visitor

Registered: 03/16/17
Posts: 1
Hi! Oh how I understand your post... I was so active (like you in the gym, weights and cardio) Now with the back pain I have been pretty much immobile for over a year(and I'm only 30!). It's so hard and depressing... I just started Methotrexate and I am hoping that should help and allow me to be a bit more active. And recently a flare up came on in my knee so I have been using crutches for 3 weeks!!

Suggestions...and they may be ones you already know, but I like Leslie Sansone videos...she does the Walk Away the Pounds videos. They are super basic and easy on the body but she does incorporate light weights into her program.

Another one is water aerobics. I did this after having my knee surgeries and while I'm not the biggest fan, it made be feel like I was at least doing something. (I can't stand swimming laps) and the last thing, which I saw someone already mentioned, was pilates. I was doing pilates but with the sacrolitiis it started causing me too much pain. But I hope to start up again

Diet is also important but I understand what you mean by also wanting to be active...not just for weight but for your mind too! I feel so much better after working out!! I miss it!!

I wish all you ladies the best! Hang in there and don't lose hope (I know my hope comes from the Lord, just knowing he sees me and takes care of me)

Have a nice week!

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