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New here & looking for advice.

May 30, 2018 3:57 PM

Hello all! I have Crohn's Disease & Ankylosing Spondylitis (although I'm not confident in the AS diagnosis since my pain is in every joint in my body & I'm hlab27 negative). I have been in moderate to severe pain for years. I have educated myself, researched, fought & sought healing for 15 years but my pain & illness continues to get worse. What helps you through your rough days? I have 2 special needs toddlers so there is no time to just lay in bed or rest. Seeking encouragement & your best tips!!

May 30, 2018 7:50 PM

I too have been dx with AS. My Hla 27 is also negative, and all my joints are also inflamed. I take Plaquinil and 2400 mg of Gabapentin for nerve pain. I also have spinal stenosis and too many other dx to mention. Iโ€™ve been fighting pain since I was in my early 30 and too some extant even before. Iโ€™ve tried it all: meditation, prayer,pain meds, lotions, pads, TENS, warm, cold, etc some help if I catch it early enough at other times nothing helps. I wish I could be of more help. Sometimes talking to others who truly understand your pain helps. My children are all grown up. My heart goes out to you as I canโ€™t imagine with a bad day and no sleep how you are able to take care of your little ones as well. Do you have anyone you can depend on that can help you? I wish you the best. AS can go to your other joints as well. I also have RA and Psoriasis as well. Take Care.๐Ÿค—๐ŸŒธ

May 31, 2018 2:52 PM

Hello pfam5, i understand your needs and its difficult at times with toddlers growing up. I can advise you to Do exercise every morning(not evening/bedtime) after you wake up it eases up your pain & mobility in daily routine activities if you have AS.

Jun 01, 2018 6:23 AM

Thanks for the replies!! Painwarriror I also have many dx autoimmune diseases. The AS is definitely the most difficult to deal with on a daily basis. I have tried many meds over the years & humera combined with Methotrexate injections worked the best but did eventually stop working. My husband is helpful when he is home but he works during the day. He's about to switch to nights though. Jolly my pain is bad first thing in the morning but I did recently join a gym. They offer several classes for the elderly that will be perfect for me, lol. I'm only 35 but I move like I'm 80 ๐Ÿ˜‚. These classes are at 10 which is when my body starts to loosen up.Iv been to one class & enjoyed it...it was mostly stretching. I look forward to attending more & making it a part of my routine!

Jun 01, 2018 2:28 PM

Oh my only 35 and feeling like 80! I too felt that way at your age. Iโ€™m 64 now so feel older than dirt! Lol ๐Ÿ˜‚ Humera also worked for me earlier on. Great. On Azathioprine now a immunosuppressant. Also take Plaquinil for inflammation. I too have to warm up in the morning. Going to a health club and walking. As they say โ€œuse it or lose itโ€ There are those days especially in the winter Where I feel like Iโ€™ve lost it, but we move on. Good luck with your treatments.๐ŸŒธ

Jun 02, 2018 9:02 AM

pfam5, it's hardest being young with little ones to care for, fighting chronic pain of any kind. I'm 56 and started with OA in my 30's, but over the last 15 years I've developed all types of medical issues, fibromyalgia, Sjogrens, & spinal stenosis affecting me the worst. Plaquenil has been a big help for both, along with gabapentin. I wake very stiff in the mornings, but even during the days I get painfully stiff if I'm immobile more than one hour. I also have lower body circulation issues, which caused a problem at my grandson's graduation. When I tried to stand to leave my blood flow wasn't working and I had to sit back down to massage & wiggle my feet & legs, just to get the blood pumping upwards.

There is no one thing any of us can do to heal our issues, or at least none I know have yet. But suggestions from others I've tried, and things like stretching, gentle exercise, eating less red meat & sugar, and taking frequent breaks, they all help me cope from one day to the next. My situation of so many dx issues is like "darned if I do, darned if I don't," can't get one thing better before something else acts up. Getting anxious and frustrated only worsening my issues. So I've learned to take it one day at a time, one hour at a time. And when I need to rest I do, even if only 10-15 minutes. My youngest who is 30 now (wow I feel old! Lol) was a toddler when my neck first gave me issues and I couldn't lift her. I created a game of her learning to climb, be independent and be "mommy's helper," which was very helpful to my body. And when she napped, so did I. I'm sending gentle hugs love & prayers that you can find ways to cope from day to day! ๐Ÿ™‚โค๐Ÿ™๐ŸŒผ

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