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#278254 - 06/16/17 06:19 PM Do I have this?  
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doodle Offline
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I am 50 years old. History of low back pain which has flared up occasionally over several years. Was always manageable and didn't last more than a week or so. Then a few years ago developed plantar faciitis. I had started running so blamed it on poor technique and quit running. I continue to get foot pain though even with walking which I do 5 km a day for my dogs and for me. I have had morning stiffness for at least a couple of years. I'm only 50 and feel like I should be still jumping out of bed every day. I used to love my mornings. Then started getting severe tailbone pain shortly after PF. That lasted a couple of years but is somewhat manageable too. Last summer developed trochanteric bursitis. Severe but resolved. Now my back pain for this last year has been quite constant. I get relief with movement, yoga and chiro. I take the occasional advil to get me through a tougher day. It works wonders. I get buttock pain/burning that also travels down the front of my thighs. And now my ankles and shoulder caps are sore too. This must be all related!!

I have gone to family doctor over the years, usually for one thing or another. She always told me it was a part of getting older or menopause. She never looked at all the problems together until I asked her to last week. She agrees it may spondyloarthritis. I am from Canada and she said it could take up to 3 years to see a rheumotologist!!!! That is what I am so worried about. I can manage my pain as usually one thing is worse than the other but I am worried about the damage that could be prevented if diagnosed sooner. I am stunned it could take 3 years. Our healthcare here is terrible.

So I am reaching out to ask if this sounds what so many of you are struggling through. If so, how can I take care of myself until I am diagnosed?

Thank you so much.

#278257 - 06/16/17 07:29 PM Re: Do I have this? [Re: doodle]  
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SouthernMoss Online
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I'm sorry it will take so long to see a rheumy. So frustrating!

You might ask your doctor about the benefits of being on a regular regimen of Advil or a prescription NSAID. Uncontrolled inflammation can cause damage to joints and entheses, and NSAIDs can help control inflammation. Of course, as with any drug there are side effects to NSAIDs, which is why you need to discuss the pros and cons with your doctor.

Physical activity is an important part of any treatment plan for SpA, so keep that up! I always recommend swimming or water aerobics, because movements in water are easier on the joints.

Be careful about chiropractic adjustments, and be sure to discuss with your chiro the possibility that you may have SpA of one form or another. Uncontrolled inflammation for extended periods of time can make our bones more subject to fracture, so I would suggest you stick to soft tissue work until you know for sure whether you have SpA or not.

Diet is also an important component of a good treatment plan. Different people will swear by different diets, but the important thing is to eat healthy.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#278262 - 06/16/17 11:34 PM Re: Do I have this? [Re: doodle]  
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doodle Offline
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Thank you SouthernMoss. I will talk to my doc about advil or NSAID. I worry about hearing loss and stomach problems if taking long term so try not to take it very often. But I didn't know that controlling the inflammation could help protect the joints.

Yes, I find exercise important. I do my walking, did love my running. I've taped 150 episodes of a yoga stretch series. It makes me feel so much better.

I've read about chiro not being good for SpA but didn't know why. Thank you for that information.

And yes, I am looking at diet. Having two teenage boys makes it difficult but am looking at cutting out starches or going to all plant based foods. Any suggestions? This will be really difficult but like you said I think keeping it healthy is most important.

Thanks again!

#278269 - 06/17/17 02:33 PM Re: Do I have this? [Re: doodle]  
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Tacitus Offline
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Hello, doodle:

Every case is different, and Your AS has emerged late in life, so You might not want to go through all the usual things.

Try this first, for the morning stiffness: 6-8 1000mg capsules borage seed oil upon retiring. EVOliveOil by teaspoonful during the day (8+ times especially before each meal).

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

#278271 - 06/18/17 11:59 PM Re: Do I have this? [Re: doodle]  
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doodle Offline
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Thank you John,

Do you take tumeric for anti-inflammatory effects? Seems to be what everyone is taking right now.

I had alot of pain this week, stiffness and aching from my neck down through my knees. I took one dose of ibuprophen on Friday and one dose yesterday. Today I woke up completely pain free. Would the ibuprophen keep the inflammation down for that long or does it take time to build up again? I couldn't believe how 'normal' I felt. Of course, I just lugged 5 flats of water and 4 cases of hotdogs down the stairs and now my shoulders are acting up again. A year ago this wouldn't have happened as I'm used to carrying this kind of stuff for the volunteering I do. So strange that whatever this is has suddenly taken off this year.

#278272 - 06/19/17 06:28 AM Re: Do I have this? [Re: doodle]  
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Tacitus Offline
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Hi, doodle:

I do not like turmeric because it is too starchy; the extract can be useful as an anti-inflammatory.

Happy You have had good results with the ibuprofen. AS waxes and wanes depending upon several factors which interact with each other. The NSAIDs cannot eliminate the inflammation but can take it down quite a bit and the effect can last a day or so, depending upon activity levels. But I recommend the oils over NSAIDs because they will not increase the severity of AS and will help in healing gut lesions and large cell gap that cause permeability.

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

#278278 - 06/19/17 07:45 PM Re: Do I have this? [Re: doodle]  
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doodle Offline
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Thank you John, I'm learning more everyday!

#278285 - 06/20/17 02:59 PM Re: Do I have this? [Re: doodle]  
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gardengal Offline
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Doodle - After a lifetime of "small problems" with back & leg pains, I began to experience more serious issues in my early 60's. Recurrent plantar fasciitis was the first big red flag, then SI joint and hip pain, chills, muscle weakness and fatigue. My sed rate was 78 and after checking out thyroid and other basic tests, I was sent to a rheumy who did full X-rays and scans and then put me on prednisone and Vitamin D, and things improved fairly quickly for a time.

A few cautions - Plaquenil can damage your hearing (it's the quinine in it), and if you are taking anything for blood-thinning (aspirin or stronger), concentrated turmeric can be dangerous. Investigate supplements thoroughly before you take them, and whenever possible use only those which are certified pure.

Ginny is spot-on about the water aerobics, you can hardly go wrong there unless you just go to extremes. It's easy to over-exert in the water, because you feel so much less pain there. I resisted getting in the pool at the Y with "all the old ladies" for a long time - but now I'm one of them and it's like having a great gang of sisters (and a few brothers). Super social and moral support.

Improving your diet may help. I was advised to go on a "low-fat, low-carb" diet when my liver & sugar labs went haywire. My cardiologist recommended trying the South Beach diet or something similar - I've never had to watch my diet and didn't know where to start. Since March 8, I've lost 25 pounds and my husband has lost maybe 15 - and we both have TONS more energy. Eating properly isn't cheap, but it's worth it.

One disadvantage of being "older" as we begin the spondy journey is that often we are dealing with additional medical conditions, and this makes diagnosis and treatment more of a challenge. We may be cautioned against NSAIDS like ibuprofen, because complications can be more likely. And we are often told "it's part of aging, accept it" or some such nonsense. You know your body and are your own best advocate. These forums are a great place for advice and encouragement; sorry you have to be here, but welcome to the club!


Joani; 70-year-old with undifferentiated spondylitis and erosive inflammatory osteoarthritis in hands & wrists; spondy meds presently are low-dose prednisone, sulfasalazine, Voltaren gel for hands & elbows, Vitamin D, glucosamine w/ chondroitin, fossamax. Take other meds for heart issues & sinusitis. Blessed with great husband, 5 kids & their spouses, 10 beautiful grandchildren.
#278290 - 06/21/17 04:18 AM Re: Do I have this? [Re: doodle]  
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doodle Offline
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Thank you gardengal. Such good information. I don't feel so alone after seeing you had all these small problems that led to your diagnosis. I agree that water aerobics would be the thing but I am a very loyal dog owner and try to get my exercise in with them. It works for me for now anyways.

I am looking at diets right now and know I should be changing things. I love to cook and my family loves my cooking. To change everything would be a big task and require some dedication. I admire that you and your husband have lost so much weight and feel so good. That is my goal!!!

Thanks again for your advice. I had no idea this would be such a long journey and that I would have to drive the car.

#278305 - 06/22/17 12:47 PM Re: Do I have this? [Re: doodle]  
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gardengal Offline
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Hi Doodle - I was a distance walker prior to all the spondy stuff - but we live in the country and jumping the ditch beside the road to avoid oncoming cars has become impossible. The advantage of water exercise is that I can maintain range of motion and flexibility on all joints with very little stress on them. I should be walking on days when I'm not in the Y pool, but have plenty of other activities I'd rather do.

I, too, love to cook, and have been surprised to find that I can be just as creative with the Mediterranean-style cooking. Granted, it takes some adjustment, and I can't honestly say that I never "cheat" a bit. I think I miss the bread-baking/eating more than the sweets, though. It helps that we have a vegetable/herb garden, and can get grass-fed beef and pork and free-range eggs from nearby neighbors. Not sure I could sell this diet to my teenage grandchildren, though...!!

What an apt metaphor..."I had no idea this would be such a long journey and that I would have to drive the car." Will be praying you can get to see a rheumatologist sooner than you anticipate. In the meantime, hope you will explore this website thoroughly - there's a ton of information. Take care -


Joani; 70-year-old with undifferentiated spondylitis and erosive inflammatory osteoarthritis in hands & wrists; spondy meds presently are low-dose prednisone, sulfasalazine, Voltaren gel for hands & elbows, Vitamin D, glucosamine w/ chondroitin, fossamax. Take other meds for heart issues & sinusitis. Blessed with great husband, 5 kids & their spouses, 10 beautiful grandchildren.

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