SAA’s Helpful Hints: Community Wisdom – Advice for the Newly Diagnosed

By Spondylitis Association of America

Wednesday, January 30, 2019

Helpful Hints is a recurring feature, aimed at sharing our community’s knowledge and experiences. In this fourth installment, we asked our online community, “What advice would you give others newly diagnosed with spondylitis?” We share a sample of responses with our thanks. We hope you find them helpful!

From our Facebook Community:

“Take your meds. Listen to your doctor. Stay active and stay positive.”
~Cassie P.
“I’m surprised not many people here have mentioned starting on a biologic - it makes more of a difference than anything non-pharmacological in my experience. It’s like being normal again.”
~Karen T.
“Move, move, move. Keep active, because you feel so much better when you do. Start a workout regimen and dedicate yourself to making it a lifestyle. Understand the difference between the limitations your body has and the ones your mind creates. Challenge your body, but don't injure yourself. Experiment with foods to see what helps the most; [removing/reducing] gluten, dairy, sugar, starch, carbs--they affect each person differently.”
~Meghan P.
“Get a car with heated seats.”
~Lisa S.
“Try Holistic approaches such as diet and exercise and CBD before immunosuppressant medications.”
~Franny G.
“Yoga”
~Robin S.
“Clean eating and exercise are a base for improvement. The decisions you face along the way are your decisions. Other patients will provide input based on their experience but ultimately those decisions are yours dependent upon your own situation.”
~Gerald M.
“Use any assistance/accommodation that helps reduce pain and fatigue (i.e., a scooter at the grocery store). This allows you to do more you actually want to do with the energy you have, instead of using it all standing in a line at the grocery store. Also: your journey with Spondylitis is different from anyone else's. Try not to compare your journey to someone whose disease is more or less severe than yours.”
~Charis H.
“Go easy... keep your weight in check.... stretch.... did I mention, keep your belly under control. It's not a death sentence, a good many of us are leading full active lives with Spondylitis. But there are limitations that you need to be aware of.”
~Mario N.
“Find a local support group, it can do wonders just to have a face to face with someone who understands the diagnosis. Do your research with reputable sources, be an advocate not just for yourself but for others too. The more people hear and learn about Spondylitis the more it will help us all as patients. Stay on top of any changes you notice in yourself, don't just pass anything off as not important and be sure all doctors you see communicate with each other and stay on the same page with your plan of treatment.”
~Summer C.
“Find a good doctor who listens to you and you feel comfortable with - it makes a huge difference. Keep moving as best you can, eat right and try to get plenty of rest. Most important for me was a great support team! My husband is my biggest team member and has never let me down or made me feel anything less than wonderful. And last but not least, try to have a sense of humor about it all when you can.”
~Julie M.
“Keep moving”
~Claudia G.
“Don't stop moving”
~Jody P.
“Keep moving and don't be afraid of treatments offered. Research, research, and research. Join a SAA Educational Support Group in your area....”
~ Dan W.
“Keep moving. A lot. Every day. And I really mean, EVERY.”
~Simon K.
“It's a lot of information to digest, so take it at a pace you can tolerate. When researching, use reputable resources, like SAA. (They are still my go-to resource.) When it gets to be too much, walk away from it until you are ready to learn more. Reach out to others who are facing the same. There are online support groups that you can join. It helps so much knowing you are not alone. Find a good rheumatologist who is knowledgeable in your type of spondylitis...one who will listen to you and work together as a team to make a plan of care.

Non-pharmaceutical treatments are just as important as pharmaceutical. Finding the right form of exercise that will help and not aggravate symptoms is essential. (Yoga works great and can be modified for your limitations.) Protecting your sleep is vital also. Most of all, find what works well for you. Everyone is different. One person's triggers may not be yours. Listen to your body and hone in on your triggers (whether environmental, emotional or food). It is important to know what affects YOUR body. Finally, communicate with your loved ones. They do not know what you are feeling unless you tell them. Communicate what you can and cannot do. Communicate what you now need from them that may be different than before. This can be manageable. You have to find your team of support for that to happen. You can do it. You are not alone!”
~Regina J.
“Move out of the stage of denial as quickly as possible and educate yourself, then build for yourself a network of support, because family cannot be your everything.”
~Holly F.
“STAND TALL! You have Spondylitis... it doesn't have you. I've learned to suffer silently and live loud.”
~Roly L.
“Listen to your body. I have been a long-time believer in mind over matter and caught myself thinking that my body just won't listen. I realized that it was me not listening to my body while it was crying out, "I can't do this!" Slow and steady keeps me going.”
~Jacquie S.
“Network with others who have Spondylitis. You will learn so much! Keep positive.”
~Tina B.

From our Instagram Community:

“Become a member of Spondylitis Association of America, then read all the information they provide. Find a friend with Spondylitis to be there for you; if you’re a spouse, find another partner / spouse of someone with Spondylitis (this has been awesome for my hubby and I.......actually awesome for my hubby). Find a great Rheumatologist and take a notebook of your questions to every visit; keep a journal or use a wall calendar to write your pain levels, doctor’s appointments, medication added or changed, food you are eating, fever or sickness or any flares you have.”
~ ashley_t12
“You’re not alone.”
~taylorcroom
“Your entire life will change, roll with it. Fight for good, quality care. Don't take no for an answer.”
~thetreesgrowsideways
“Find a doctor who really understands spondylitis, as this is a lifetime journey. Find a good support group too, folks without this disease will never truly understand what you're going thru. Never give up!”
~kenmare14
“Some physicians will not respond to big emotions. It does not mean your feelings are not valid or real. If able, try to explain the impact your symptoms have on your daily functioning and social life. Ask your physician to document anything relevant to your symptoms affecting your daily living activities... this is a way to break down emotions and have them well-documented... and always ask about your medication side effects.”
~feleciafox
“Exercise and Diet. Never give up, and even on your bad days do just enough to keep moving.”
~transforming_pain2power
“You may not know (or remember) everything related to your illness but that’s okay. Listen to your body and surround yourself with support.”
~sweetp_2u
“Prepare for battle... strengthen yourself in mind, body and spirit. Be disciplined in using food, exercise and laughter to heal yourself. Take the biologic. It may get worse before it gets better. Learn the difference between acute and chronic phases of the disease and don’t let the acute win.”
~ jillgrisez

From our Twitter Community

“I like the advice I received to gather a team of people you trust & support in various ways. They don't need to know they’re on a "team." Such as a: rheumatologist, psychologist, nutritionist, physical therapist, ophthalmologist, family member, friend, clergy, yoga teacher, SAA support group…”
~@RichAHoward
“Don’t work for cash. Work in jobs where FICA taxes are withheld. It can be disabling. If a claim for Social Security Disability (SSDI) is needed, those work credits are very important.”
~@nashssdilaw
“Never give up on yourself. Be happy no matter what.”
~@netbbekhtereva
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