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#277564 - 03/18/17 09:51 PM Newby looking for some insight
Spring_hill Offline
Registered Visitor

Registered: 10/28/16
Posts: 7
Newby here and hope I'm posting properly as I'm not particularly tech savvy.

I've had three, conflicting professional opinions and have read a ton, but I'm hoping to gain some insight from those of you who actually live this. I'll just "dump" the facts as briefly (ha ha) as possible, and take in any opinions/advice.

I'm 47, average weight with no previous back injury.
I got sick, in August of 2007 and have not been the same since. Primarily due to fatigue.
I'm b27+ and have a slightly elevated RF.
No damage on X-ray and no inflammation on MRI (though I question the mri)
I pass all, but the modified New York criteria, for (nr) ax-spa.
Was on plaquenel and Nsaids, but quit using them. My insides were coming unglued!

Spine - Have had lower back pain my whole life, though I'm sway back and would only feel pain as a kid after a lot of walking. As a young adult, this same pain progressed a bit and was more often. In addition, at times I was unable, at least without pain, to sit straight up from lying flat on floor and would need to roll to side and on to knees first (I'm still this way...still at times). Approx. 3-4 yrs. ago I started to wake, in the middle of the night, with searing pain in my lower back. Seemed to start each year in the fall and stop by spring (I live in PA). It would occur one night, once in a blue moon, then progressed to more nights in a row and more often, and has been almost nonstop since last fall. The pain scale varies primarily between 6-10, is relieved almost instantly if I get up, yet is impossible to escape if I don't. Position and heat help slightly...but not effectively. Daytime pain is pretty constant if seated or standing stationary (folding laundry, doing artwork etc.). I use a heating pad at all times when seated, however I have no pain when actively moving around. This daytime pain is different than the searing pain at night. It is a deep ache from lower back to top of neck. Not typically all at the same time, though it's bad when it is. I first noticed stiffness in my neck about eight yrs. back. Now it's always stiff. My tailbone has recently become an issue.

Wrist and finger - pain/stiffness always to some degree. Hard to brush teeth some mornings. Surgery for De quarevein's tendonitis in both wrists. 2 swollen, synovial fluid filled, pip joints (R ring & pinky)for over a year.

Shoulders and Hips - early 40's, 2 unexplained bouts of rotator cuff tendonitis. One shoulder 1st time. Both the 2nd. Hip pain at times, stiffness often (seems to be progressing). Sometimes outer pain if I lay on my side. Sometimes, but rarely, a searing inner groin pain. A limp that has been pointed out by my husband and kids when I first stand up and start walking. This last one has become more often, lasts longer, and is including more of the inner pain, though not searing.

The rest of me - a slight heart murmur. Lots of fatigue...or it's all in my head??? My eyes burn constantly...they're sooo tired. Other arthritis here and there. That's mostly it and some of it will probably lessen as this spring snow melts. Sooo???....

A lot fits b27+, 2nd 1/2 of the night inflammatory back pain relieved by activity etc., but some doesn't fit like the lack of morning stiffness, arthritis in my fingers a searing pain vs. the dull pain I always read about. I apologize for length here, but would be so grateful for any insight.

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#277566 - 03/18/17 11:16 PM Re: Newby looking for some insight [Re: Spring_hill]
Tacitus Offline
Registered Visitor

Registered: 06/06/03
Posts: 2892
Loc: Reno/San Fernando LU PI
WELCOME, Spring_hill:

You have Ankylosing Spondylitis.

Because I also have AS and have experienced everything in Your list also--plus way too much more!

ABSOLUTE--with the characteristic need to "roll!" Yes, not kidding.

Be thankful for so many years it was mild.
NSAIDs accelerated my AS considerably.
When I had active disease, I also had heart issues--lost the ventricular bauble after finding correct treatments.

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


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#277575 - 03/19/17 05:19 PM Re: Newby looking for some insight [Re: Spring_hill]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1712
Loc: MS
Spring_hill, your symptoms could certainly indicate some form of SpA. You mentioned conflicting opinions - what other diagnoses have you received?

Did the plaquenel and NSAID help while you were taking them? What treatment are you receiving currently?

Dry eyes are not uncommon for us. Try using a moisturizing eye drop several times a day. I even have to use them when I wake during the night.

I'm not sure why you think arthritis in the fingers is not a symptom, or am I reading your last paragraph wrong? Many people with AS have peripheral involvement, and in psoriatic arthrtitis fingers and/or toes are almost always involved. Another thing to keep in mind is that you can have more than one form of arthritis. So you may have osteoarthritis in some joints and SpA in others.

_________________________
Ginny - 56 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 D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#277576 - 03/19/17 09:21 PM Re: Newby looking for some insight [Re: Spring_hill]
Kris44 Offline
Registered Visitor

Registered: 03/23/16
Posts: 7
Hi Spring Hill:

I have a dull aching pain in lower back, but had about 8 months of really severe sharp pain upon changing positions, such as getting up from sitting position or in and out of the car. The pain became so severe that at times it would drop me to my knees. It finally lessened and only does it when I lay in bed with my head elevated and then try to turn on my side. And the sharp pain is different from disc pain, because I've had herniated discs and surgery in past.

I also have bad ankle pain and new wrist pain; also worsening in my hands and toes. I had on and off pain since I was 15 years old in different joints and lower back, but everything seemed to escalate about a year and half ago. I am a RN and I was doing home health, working on a patient's leg wound and I was squatting down, leaning over on the floor. I got to my car and haven't worked since. The pain just went wacky and my body went into horrible flares. The fatigue is miserable. As far as morning stiffness, I think I have been living and compensating with pain so long, that I didn't even realize I was having it. When you talk to "healthy" people who don't have it, you may come to realize that you are more stiff than you realize.

So, in my humble opinion, you sure sound like you have AS, and as others have mentioned there could be other arthritic like conditions on top of it.

Not much medication wise is helping me ... think I'm getting some relief from humira and sulfasalazine, but still in daily pain. Muscle relaxers are helpful but make me so hung over the next day. Wish there was a quick fix.

Thanks for sharing smile


Edited by Kris44 (03/19/17 09:22 PM)

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#277579 - 03/20/17 09:11 AM Re: Newby looking for some insight [Re: Tacitus]
Spring_hill Offline
Registered Visitor

Registered: 10/28/16
Posts: 7
Thanks I appreciate your thoughts. Did you also have sharp pains? It's the thing I question most. I've read things like "In advanced disease...", but I have no fusion or inflammation. Also, I'm curious about your experience with NSAIDs.

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#277581 - 03/20/17 11:44 AM Re: Newby looking for some insight [Re: Spring_hill]
Kris44 Offline
Registered Visitor

Registered: 03/23/16
Posts: 7
My x-rays and MRI showed erosion of the SI joints in my back; no fusion. I was having sharp pains at that time, but MRI didn't show any active inflammation, just signs of old periods of inflammation. My rheumy said tests aren't perfect and offered steroid injections in the back. It was kind of a mystery as to why it was so severe.

My hands show some erosions of joints, as well. From what I've read, it takes years and years of disease activity for signs to show up on MRI/x-rays.

NSAIDs were helpful for the dull, low grade pain, but it seemed like nothing would touch the sharp pain. ( I used ibuprofen and then Mobic). And they didn't last long, so I would have to take a lot. I am on sulfasalazine now with a little relief, but I am in the process of titrating it up. The heating pad helped the most with a lot of the sharp pain.

I don't know what finally stopped the cycle of the sharp pain. I did start on Humira, as well as the sulfasalazine, so I don't know if that was also a factor.

Weird disease. I'm having more rib pain now too. Like I said, I've had flares and pain since I was 15 years old, but it just seemed to really ramp up and take off when I was around 43. Since it is worsening so quickly, I decided using the anti-TNF drugs, like Humira was necessary, since they are the only drugs that actually slow down the disease process and work on the spine.

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#277583 - 03/20/17 11:57 AM Re: Newby looking for some insight [Re: Spring_hill]
Winston Offline
Registered Visitor

Registered: 06/30/16
Posts: 189
Spring_hill: You might try gabapentin (generic available) or pregabalin (brand name only, marketed as Lyrica) to help with pain if you can't tolerate NSAIDs. It's common to develop a fibromyalgia-like syndrome when you are a chronic pain sufferer, and gabapentin and pregabalin help with that. They also help you sleep.

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#277589 - 03/20/17 02:20 PM Re: Newby looking for some insight [Re: SouthernMoss]
Spring_hill Offline
Registered Visitor

Registered: 10/28/16
Posts: 7
Ginny, sorry for the length, but with a possible new disease that affects the entire body it's hard to be short. I've stalked this forum quite a bit, in my quest for answers, and have read quite a bit of your advice to others, so thanks for that too!

The three Rheumatologist, that I've affectionately dubbed, Dr. We'vegottime, Dr. Doesn'thaveaclue, and Dr. Don'tquestionme have told me things like, "I have lots of patients with back pain like that", implying it's normal at my age, "We've got time and it doesn't really matter what you have anyway, because they're all (RA, Osteo, & SpA) treated the same", but they're not, "AS is so rare", not true. "And trust me, if you had AS as long as you think, you'd never be able to sit in that chair and your spine would be completely fused", which is rarely the case. When I pointed to my right si joint, according to every medical illustration I've ever seen, one of them even told me "That's not your si joint, it's way down here." Soooo...my diagnosis? I don't even know!!! I feel confident they all would have patted me on the head and sent me home if it weren't for me informing them. These are rheumatologist...with impressive resumes! I just don't get it??? I think I have (nr)axSpA or axial PsA pre psoriasis(not common, but not impossible), BUT I doubt myself as a hobby. I don't necessarily care what I have except that it matters if and how I treat, i.e. I don't want to treat osteoarthritis with a biologic nor do I want to have my spine fuse because I didn't treat AS.

Yes, the NSAIDSs helped. I read that flares follow one of, I think, three patterns. A severe up and never again, once every few years for a wk. to a mo., or a continual up and down. I'm seem to be in the third category, so where pre-NSAIDs I was bad (relative to me) to mild to nothing, medicated I was mild to nothing, but never completely gone. If that makes sense. I could never get a straight answer as to what I should expect. Same with the Plaquenil. After informing Dr. Doesn'thaveaclue that dmards have not been shown to be effective in treating the spine and are not recommended for axial involvement (btw, saw your response to the biologics article. I agree. I accidentally added the wrong link. I'll fix it when I find the right one) I was told plaquenil is mild and and I may have RA too. So hmmm? Let's treat the very low RF and non-symmetrical finger joint inflammation and ignore (she did not prescribe the NSAID) the b27+ and sleep depriving, severe back pain. Mild or not, I'm not into putting extra stuff in my system for no reason nor am I into paying for it! And btw, though snarky here, I very respectfully and gently inform, as I find most, for sure not all, but most doctors, despite what they say, DO NOT like informed patients informing!

No, I'm not taking anything at this time, but I'm not good either. About six mo. in my body started to reject the NSAIDs. My rheumatologist cut the not entirely effective dose in half. When that didn't work she prescribed a different NSAID. When that didn't work she told me she doesn't see me as high risk, that even if I do have ax SpA she doubts my spine will fuse, so I don't need to take them. She never offered me another prescription to counter the side effects or any other option.

I'm an eye drop junky, but I'm always running on so little sleep. My eye doctor said my eyes are borderline dry, but within the norm. I also ask if the decline in my vision correlated to my illness in 2007. According to him, not outside of the expected. Do you know if a decline in eyesight, apart from anything uveitis related, can be an issue?

I question the arthritis in my fingers, because it does not fit the options I've read about with PsA. Mine is just two pip joints on the same hand. Not a sausage digit, not the dip joints, not the damage of Arthritis Mutilans...I pray, and not the symmetrical RA mimic. I do have mild pain, at times, and mild to severe stiffness, always, in both wrists and every finger joint, but I was told that it is Osteo. I was 45 when told this. Is that really normal? I am an artist though, and I do use and abuse my hands. In conclusion....I sooo apologize for the length, I not only consider the possibility of other forms of arthritis, I consider if maybe I only have a non-inflammatory form. Is it possible that the back and joint pain, b27+, bouts of unexplained tendinitis and fatigue are just coincidence. Seems like a stretch to me, but nothing seems textbook and the rheumatologist don't seem concerned. Ugh! I'm so tired of questioning if it's all in my head!!! I wish there were a definitive blood test!

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#277590 - 03/20/17 03:51 PM Re: Newby looking for some insight [Re: Kris44]
Spring_hill Offline
Registered Visitor

Registered: 10/28/16
Posts: 7
Thanks for weighing in. I've never been limber. Half the boys on my high school x country team could stretch further than I. I recently went to a physiotherapist who told me my range of motion was limited for my age, but maybe I'm just genetically built that way. The pain and the stiffness both seem to be more than anyone I ask, but maybe I'm just a whiny lazy but and am not actually in pain and tired....Ahhh!! I'm going crazy with self doubt and guilt. Not that I envy the pain many of you are suffering or have suffered and I do want to be grateful for how mild this is for me, but I do wish I had the radiographic damage, the smoking bullet, the clear cut, yes you need to take biologics, which imo are actually safer than the NSAIDs...not that my Rheumy has offered.

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#277592 - 03/20/17 03:59 PM Re: Newby looking for some insight [Re: Winston]
Spring_hill Offline
Registered Visitor

Registered: 10/28/16
Posts: 7
Thanks for the info. Though I do suffer bouts of rls and other random stuff, I can handle all of that...for now anyway, but to sleep thru the bane of my existence, the pain that wakes me, now that would be a dream! My only concern is I don't want to just sleep thru the pain without treating its cause i.e. I don't want to sleep thru the inflammation that is damaging my body. If I had radiographic damage, I could treat both, but I don't, so I'll just hang in there for now. Though I will look into those prescriptions.

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