Arthritis/Chronic Pain sufferers... anyone out there?

myssjaxson

So I was diagnosed with Juvenile Rheumatoid Arthritis a few months ago after several years of trying to figure out what was wrong. I have a number of immune disorders/problems and other things, but the arthritis has been my biggest issue in my weight loss/fitness journey. Are there any out there dealing with the same thing?

For me, it's the pain that tears me down. It isn't a "feel the burn" or "pain is gain" type of pain, it's a, "I can feel the cartilage in my knees wearing down" type of pain. As a kid I was always yelled at for not being able to do as much as the other kids (at that time I was an average/normal weight too), teachers/coaches thought I was lazy or whiny, but it HURT and they didn't understand. I'm looking for people who do understand. This condition isn't any excuse for me though, I refuse to let it run my life, but I must go slower than most, because I also need to protect my body. So, taking it easy during my strength training is a must (I have a bad wrist and knee), and focusing more on cardio at the moment. I think maybe finding some who relates would be nice, we can share tips/ideas as well. For instance, taking a bath in herbal mixes or epsom salt helps a lot. Icing my sore muscles for 10 minutes on/10 min off helps. Making sure I don't sit down for too long, or over-do it when I'm hurting, staying away from certain foods, etc.

FleaBailey

Yep, psoriatic arthritis here. That diagnosis came about one year after I joined this website--first indication was trigger finger on one hand, followed soon by hands that seemed "frozen" when I woke up each morning, and didn't really return to normal until late in the afternoon. My MD thought I might have rheumatoid arthritis, but I was negative for the blood factor, so PsA was the next possibility. My rheumatologist diagnosed me after 10 minutes. I've been on methotrexate for a year now and it works VERY well for me. I know we don't have the same type of arthritis, but they are very similar, and a lot of the treatments are the same.

I also have other autoimmune issues--Graves disease showed up first, and now they're saying there's a connection between PsA and Graves, but not sure what. Anyway, the Graves is much improved, and the PsA as well, and I credit my weight loss (123 pounds so far--about 80 more to go) and new exercise habits for that. And stopping smoking as well--there is a definite connection between smoking and Graves--they just don't know what chemicals in cigarettes cause it yet.(And I have psoriasis, but that's a given if you have PsA.)

I know about the pain thing--I'm currently babying my right knee with ice packs 2x a day and a sleeve brace whenever I work out or do yoga. That knee has always been a bit cranky (probably osteoarthritis from years of carrying around excess weight) and a week ago I did a cardio interval during weight training where I got on the treadmill at a 10% incline--a gentle walk, shouldn't have done anything, but it sure did! I got off and walked stiff-legged for the next 10 minutes. Since then, nothing cardio but the recumbent bike. My trainer also told me to do the ice pack thing, even if the knee wasn't hurting, so I'm trying it. I'm not doing any weight-bearing cardio until I go a week without any knee pain.

It's hard to work out when you're feeling pain, but I know that the working out makes me feel better, both physically and psychologically, so I do it. (Well, most of the time!)

Have they started you on methotrexate yet? (My rheumatologist told me that insurance won't pay for anything else until you try the methotrexate, and if it works, great. If not, they'll try some of the more expensive biologics.) You said the diagnosis was a couple of months ago--are things any better than they were? I was diagnosed a little over a year ago, and I am feeling so much better than I did, that I honestly forget I have this condition until that one day a week when I take the methotrexate. I hope it works out the same for you!

Good luck myssjaxson!

myssjaxson

We are reluctant to try any immunosuppresants and etc due to my age, we are trying the light stuff right now, unfortunately it doesn't help. My physician started me on Meloxicam first, then Diclofenac, now I am on Nabumetone. He won't prescribe anything else/different himself, we are waiting until I go to see a Pediatric Rheumatologist, I have to travel to UVA in March. Hopefully he will be able to do something more. Mine is progressing too quickly and they don't know why and won't put me on pain killers (too young, which I understand) so its pretty much just a wait and hope the new doc helps.

So far I haven't had much difference in my condition or pain. The only thing that has helped is eating better and exercising more. I have a very high tolerance to medications and its hard to treat me. I also have Endometriosis, Celiac's Disease, Tenosynovitis, ADHD, Anxiety and Depression all of which we are trying to treat as well. The best chance I've had in any of my medicines is since taking Zoloft (an SSRI), its been 8+ weeks and I feel so much better, happier. Being mentally better helps with the pain too. Right now we are trying to find what works and will work in the long-run. In hopes I can eventually go off of most of my medicines (I currently take 8 different ones daily). Its a work in progress, just like my fitness and health.

FleaBailey

Yep, I hear you on the "eventually go off of most of my medicines"--I want to do that too. Nothing can bring you down more than counting out a bunch of pills to take every day! Sorry about the waiting until March--I was told to expect to wait 6 months before getting in with a rheumatologist, but luckily a new one started her practice about that same time and I only waited about one month to see her. We hit it off and she's doing well with me so far. Do they at least let you take ibuprofen for the pain?

I can relate to the tenosynovitis too--it's given me 2 trigger fingers so far. I got the steroid shots for both and they have worked, but I worry that one of them is starting to "catch" again. My rheumatologist told me that you can only get the shots in one place twice, because otherwise you risk "blowing out" the tendon. If it comes back after the second shot, it's surgery time, and I'd like to avoid that if possible.

Aaaaannnddd, I can certainly relate to the anxiety and depression and the wonders of SSRIs! Hooray for Lexapro!

So what exercises do you do for the wrist and knee pain? The methotrexate has worked so well for me that I don't even take ibuprofen anymore, but before it kicked in I was wearing wrist braces for weight training and using a recumbent bike when my knee acted up. I also practice yoga every day or so and really like it--it makes me feel more "fluid"--if that makes any sense. But I have had to be REALLY patient with myself and not do too much so that I don't get hurt.

Psychgrrl

Adult Degenerative/Progressive Scoliosis here. Yep. Can't wear pants that sit at my waist because the legs would have to be hemmed to different lengths. Measured in inches. Exercise is by far the best pain management for me. Along with massage and muscle relaxants if it gets really, really bad.

cafeaulait7

myssjaxson wrote: »

We are reluctant to try any immunosuppresants and etc due to my age, we are trying the light stuff right now, unfortunately it doesn't help. My physician started me on Meloxicam first, then Diclofenac, now I am on Nabumetone. He won't prescribe anything else/different himself, we are waiting until I go to see a Pediatric Rheumatologist, I have to travel to UVA in March. Hopefully he will be able to do something more. Mine is progressing too quickly and they don't know why and won't put me on pain killers (too young, which I understand) so its pretty much just a wait and hope the new doc helps.

So far I haven't had much difference in my condition or pain. The only thing that has helped is eating better and exercising more. I have a very high tolerance to medications and its hard to treat me. I also have Endometriosis, Celiac's Disease, Tenosynovitis, ADHD, Anxiety and Depression all of which we are trying to treat as well. The best chance I've had in any of my medicines is since taking Zoloft (an SSRI), its been 8+ weeks and I feel so much better, happier. Being mentally better helps with the pain too. Right now we are trying to find what works and will work in the long-run. In hopes I can eventually go off of most of my medicines (I currently take 8 different ones daily). Its a work in progress, just like my fitness and health.

See if he'll prescribe Tramadol, too, because it's not exactly an opioid. And/or Neurontin. I don't have what y'all have, but I have chronic pain. I take Nabumetone (and now lots of GERD meds, too after years of it!), Tramadol, a muscle relaxant, and Neurontin. Then a dicoflenac topical as well, lol. Lidoderm patches work better than the dicoflenac gel, but they are so hard to keep up against my skin in the spots I need them.

If the SSRIs help, I'd really try Neurontin if I were you. I already took Lexapro long before my condition started, and Neurontin does fine with SSRIs.

As far as managing things, I just do what I can and try to know what overdoes mine. Exercise is really hard to figure out, but I keep figuring it out after trial and error Heating pads are wonderful things, too! As are jacuzzis Warm water workouts are the absolute best for general exercise, imho, but are difficult to arrange. If you get the chance, try it. Best of luck, y'all

myssjaxson

I take Nabumetone for the inflammation, but that's all I am taking for my arthritis right now. He won't give me any pain medication, my mother has chronic pain issues and takes Tramadol every day, if I have a really bad day every couple weeks/months I'll take one of hers. My doctor knows but doesn't encourage it, I understand why because of my age but some days I can't get out of bed and there isn't much to do about it.

So far I've started doing C25K and am doing well with it, I'm not hurting/sore like I usually am, it makes me feel better which is a nice change. I currently use heating pads a lot, man oh man mine is my best friend LOL. Also icing for short times on and off. I'd like to say anything is a miracle cure but all of it only helps to make it bearable. Won't give up hope over a miracle though!

soozey1

I have rhumetoid arthritis but have it under control with diet and exercise, I have had it for over 23 years and got it about 20. I found out after 10 years of having it, that my severe arthritis was the result of food intolerances. Once I adhered to a diet that excluded the food I was intolerance to, my pain and inflammation went. It took about a year to go. Only because it was just so hard changing my whole diet,
My intolerances were discovered through a very expensive blood test. Turned out to be intolerant to olive oil, fructose, beetroot, dairy, gluten. I went for years on prednisone, it stuffed my eyes now I have glaucoma, but no more prednisone.
Sure heat pads, Epsom salt baths and all that helped when I was sick, but nothing beats good health.
Oh and all of them vitamins and creams for arthritis were completely useless, every one of them.
Stay away from nightshade vegetables, tomatoes and love your green, good luck.

tomteboda

I started having trouble with arthritis at the age of 12. I was diagnosed after my hip dislocated when doing hurdles in track. I went a lot of years with no treatment at all aside from otc nsaids, although I tried nearly every elimination diet known to mankind to no effect.

It wasn't until I developed pericarditis (heart inflammation) that the underlying cause of the arthritis, lupus, was even treated at all. I've chosen not to go on steroids or immune system suppressants, but the prescription nsaid I'm on now (indomethicin) has been a real game-changer for me.

Reinbeaurose651

Hello, I have chronic fatigue syndrome, and some type of autoimmune disorder caused by prolonged (2 years) lymes disease infection. I'd like to join you on your journey if you'll have me! I am looking for others who have some of the same struggles as myself, as exercise isn't always an option for me as it can leave me bed bound for more than a week afterwards!! This is my third time with this ap, and I'm determined to stick with it, and not let the fatigue trip me up again. I'm almost totally home bound. I have a tendency to seek comfort foods when I'm feeling bad. Then I get bored, and EATING is the only "activity" I can actually partake in!

staceyxb

Hi i was diagnosed with jra also when i was 9 , i totally understand iam 26 now. I knew there was something wrong and i was not believed for a while but finally i was diagnosed, having ra so young is heartbreaking your life changes no matter how hard you try. I wish when i was first diagnosed i had more access or my parents had more access to online tips etc, ive unfortunatley had RA ravage all my joints ive had hip replacements(14yrs) and knee replaced(23) but i know having a healthy diet is a big help exercising with so much pain is so hard so swimming has been my best friend since first diagnosed.talking to other people who understand is so helpful so just message me if you want to talk about anything.
Stacey x

mbaker566

i don't have arthritis but i do have chronic pain/fatigue issues

I try to eat healthy and stay as active as i can without leading to pain after. it's hard to find the balance sometime