Forums33
Topics44,166
Posts519,786
Members14,012
|
Most Online1,931 Jan 16th, 2023
|
|
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)
Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)
|
|
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
|
|
|
Joined: Mar 2015
Posts: 13
New_Member
|
OP
New_Member
Joined: Mar 2015
Posts: 13 |
I'm new here. Was dx with "unspecified inflammatory spondyloarthropathy" in Feb 2015. This is likely the first of many posts. I have so many questions.
Here is a recap of my story. (sorry for the length---I am sure many of you can relate)
For me, pain started in my jaw and neck in 2000. Thought to be TMJ, did PT, medications, didn't improve. Pain spread more heavily and specifically to my neck and upper back through 2002. My trapezius muscles and in-between my shoulder blades was the worst and in constant spasm and pain. X-rays, MRIs, blood tests, many rounds of PT, OT, medications, biofeedback, neurologists, orthos, all told nothing and no lasting relief from the pain.
Also saw a Rheumy around 2002 who eliminated Fibro possibilities and instead dx Cervical Myofascial Syndrome. Did myofascial release, cranial therapy, acupuncture, massage, medications, trigger point injections, all which brought short term/partial results but nothing ever progressed to the point where pain was gone. After years of frustration with PT, and all the appts, I ended up at a pain clinic in 2004. It was short lived since really all they did was offer many of the same things I had tried and that had failed.
So, in 2004, at pain levels bouncing between 6 and 9 daily….I gave up. I stopped all treatment. I couldn't do it any more. I had lost my job and I just couldn't keep being depressed about feeling in pain and getting no where. I just dealt with it. And then….over the course of the next year or two, the pain levels started to slowly come down on their own. By 2006-2007, my pain (while not gone) was at a much more tolerable/manageable level of around a 3. I would have a a week or two here and there where my pain would spike to a 5 or 6, but it would retreat back down to a 3.
So between 2007 and 2014…it THANKFULLY stayed that way---manageable.
Then came May 2014. My R pinky ached terribly. It progressed to my R hand, wrist, forearm, elbow. GP appt, dx with tendonitis (golfers & tennis elbow). Scripted Prednisone taper, nothing. Except now I also had pain in my R shoulder and was having numbness and tingling all down my R arm. Follow up with GP: scripted 800mg Ibuprofen 3x/day and 4-6 wks of PT. Two weeks into the PT, the pain in my traps, neck and between my shoulder blades returned with a mighty vengeance. At the same time, I started having achy, tingling and burning pain in my L hand, arm, elbow, shoulder, traps. More PT, OT, medications…
Saw an Ortho in August. He actually suggested MS (ugh)! He did agree to do a cervical MRI at my request, that showed a small disc bulge at c5/6. Saw spine specialist, he recommended an epidural. I decided to get a 2nd opinion.
Saw a 2nd Ortho/Physiatrist, he found my R shoulder to be very hyper mobile. He did a cortisone shot in my R shoulder and scripted more PT with a specialized PT for shoulders. He did not feel the bulging disc in the MRI made any sense with my symptoms and did not feel they were related.
PT was extremely frustrating. I was finding myself in the same unrelenting pain cycle I had known back in 2000-2006. Plus this pain had now spread to my upper extremities and was moving all around day to day. Was this my Myofascial condition, but spread to a new area? I continued PT because this was new ground that I could not ignore. But nothing seemed to help.
Follow up appts with the Ortho/Physiatrist spurred more PT extensions through Feb 2015 and a recommendation to see a Rheumatologist. The Ortho did agree to do X-rays on my elbows and shoulders and all was normal. He also agreed to do an epidural at c5/6 just in case and while it did not make pain go away, I do think it may have helped some.
Saw the Rheumy in Feb 2015. He examined me, heard my past history and asked questions that surfaced other areas of pain that I hadn't really realized. I have had pain in my heels for years that I did not realize could be related to something. I have had pain in my lower back and hips too, it just was never extreme like my upper back, so I never gave it much thought. I also had been have some more subtle pains in my knees.He did bloodwork and scripted 200mg Gabapentin nightly. The Gab did dull some of intensity right away, but did not remove any pain. Bloodwork came back all normal except for an elevated SED rate.
At a follow up appt w/Rheumy in March 2015, he increased the Gab to 400mg nightly and took me off the 800mg Ibuprofin 3x/day and had me try Meloxicam for inflammation.
He was hesitant to diagnose me, but said he felt a spinal inflammatory disease was likely. I specifically asked about AS and he said he felt it was "unspecified inflammatory spondyloarthropathy". He explanation of the difference was that AS has fusing and the other does not. I asked if i had that AND my Myofascial condition and he explained that 10+ yrs ago, there wasn't a different diagnosis and that the Rheumy from 2002 did what they knew at the time. Things have evolved and diagnoses of Myof. and Fibro had decreased significantly because they now know that the root cause is coming from inflammation of the spine.
OK….so…. While I am thrilled to have a new diagnosis and therefore a potential path for treatment, this "unspecified inflammatory spondyloarthropathy" just isn't sitting with me right for some reason. After some Googling, I haven't found a ton of info on it (still a relatively new) and I am left to wonder how he could say it isn't AS, when he has not done any spinal X-rays or MRIs. How does he know I don't have fusing? Or the early signs of AS?
Has anyone else been diagnosed with this "unspecified inflammatory spondyloarthropathy"? Anyone else have thoughts about this? About my journey?
I welcome all your opinions. Thanks!
------ Female / 43 yrs old ~ Pain started in 2000 ~ dx w/Cervical Myofascial Pain Syndrome in 2003 ~ dx change to USpA in Feb 2015 ~ HLA-B27 negative Currently taking Gabapentin 400mg/nightly, Meloxicam/daily, MTX/weekly, Folic Acid 3mg/daily, and Flexiril & Norco only when absolutely needed. *I am in the approval process for Humira.
|
|
|
|
Joined: Apr 2013
Posts: 278
Third_Degree_AS_Kicker
|
Third_Degree_AS_Kicker
Joined: Apr 2013
Posts: 278 |
Congratulations on getting a dx! an AS diagnosis may come later, hopefully it doesn't progress to that point as it means damage is radiologically(?)evident. If you get the AS diagnosis later on, the treatment is basically the same for all the spondylarthropies. So, you are not at a loss with your diagnosis. It's a step in the right direction
Be kind, for everyone you meet is fighting a hard battle. Plato
|
|
|
|
Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
Hi elenef - sounds like AS. And, you do not have to have fusing. Fusing happens along after several years of inflammation. Men fuse earlier in the disease than women and...some don't fuse at all. Did they do the HLA-B27 blood test ? If not, suggest you get that done. Need MRI Sagittal, tau-1, tau2- fat supression scan of full spine and sacroiliacs. That is a must. X-Ray not at this juncture. X-Ray damage only shows dame after years of inflammatin. MRI full work up will show inflammation, Romanas Lesions (found in AS), syndesophytes, osteophytes, oedema etc etc. Go to the AS research forum here on KA, check out the excellent monograph put out by ASAS / EULAR on AS, diagnosis and screening for AS. That forum is packed with information. Go back to the beginning of the forum - will have to dig some. In addition check out the American spondy association - very helpful As is the UK spondy association NASS. http://www.asas-group.org/mission-statement.php2010 Update of the international ASAS recommendat... www.quotidianosanita.it/allegati/allegato9932324.pdf - Similar to 2010 Update of the international ASAS recommendat... 17 Nov 2011 ... with the update of the ASAS/EULAR recommenda- tions for the ..... international Society (ASAS) handbook: a guide to assess spondyloarthritis. (ASAS) handbook: a guide to assess spondyloarthritis - ... 65.54.113.239/.../the-assessment-of-spondyloarthritis-international-society... The handbook focuses at this time on axial SpA, with ankylosing spondylitis ... 2010 update of the ASAS/EULAR recommendations for the management of an... . I had no luck on locating all the information on KA...tch. Irritating as there was a whole wealth of information on that forum, but only seems to go back two years, need more like five or more years ! Will see what else I can find for you. http://www.researchgate.net/publication/24418938_The_Assessment_of_SpondyloArthritis_international_Society_%28ASAS%29_handbook_a_guide_to_assess_spondyloarthritis Will have to log in to get the full access, but it is free. Good informative monograph. Can also search the internet un various research criteria. Always note the 'big boys' names, then can search under name, which will lead to papers various. Fascinating, but hugely time consuming...!! Start with a search under the named authors in this handbook - months of reading ahead of you !! Have fun digging. Any other research dead ends you come across, put in a shout to me, and will pile in to help. OK? Molly C - Keeping on Keeping on - as we all do, innit ? <smile>
MollyC1i - Riding OutAS
|
|
|
|
Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
Here's another one for you - see the references, excellent range of research material - all the big name rheumatologists - https://openaccess.leidenuniv.nl/bitstream/handle/1887/29572/12.pdf?sequence=6http://www.sciencedirect.com/science/article/pii/S1297319X13002881 - useful and always check references which leads to even more material New advances in juvenile spondyloarthritis : Article : Nature ... www.nature.com › Journal home › Archive › Review 10 Apr 2012 ... The new ASAS classification criteria for peripheral SpA in adults who have ..... The American College of Rheumatology (ACR) treatment .... (all summarized here in an ASAS handbook)—to juvenile SpA is limited, mostly owing ... Download a complimentary source PDF. - MedPage Today www.medpagetoday.com/.../Ann%20Rheum%20Dis-2012-Sieper-700-6.pdf12 Apr 2012 ... International Society (ASAS)/EULAR recommen- dations for the ...... international society (asas) handbook: a guide to assess spondyloarthritis. Spondyloarthritis - Physiopedia, universal access to ... www.physio-pedia.com/Spondyloarthritis - Similar to Spondyloarthritis - Physiopedia, universal access to ... Studies are under way to define ASAS criteria for nonaxial (peripheral) SpA. ... international Society (ASAS) handbook: a guide to assess spondyloarthritis ..... for the ASAS/EULAR management recommendations in ankylosing spondylitis, ... Here's a raft of research for you - good digging... http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60071-8/references Have fun...
MollyC1i - Riding OutAS
|
|
|
|
Joined: Feb 2011
Posts: 238
Second_Degree_AS_Kicker
|
Second_Degree_AS_Kicker
Joined: Feb 2011
Posts: 238 |
Your symptom pattern sounds a lot like mine.
The pain for we when at its worst was very left side-dominant, with major neck and "in between shoulder blade" pain that was driving me absolutely crazy, it was so intense (couldn't use arm muscles, turn neck, TMJ, eyeball pain, felt like the roof of my skull would blow out!).
It's been five years since the major, systemic symptoms started to present in me, and no imaging or blood work has offered up any sign and proof to support a Spondy diagonsis of any kind.
My rheumy sees me for "inflammatory back pain," and all I get (and want) from her is my LDN script, and the rest of the symptom management I do myself, via an anti-inflammatory diet, which has produced night & day results for me (and many, many others) in terms of improved life quality, majorly improved energy levels, and ultimately, reduced pain and stiffness in all joints and spine.
The difference from before this diet change is truly astounding - I recommend visiting the NSD forum here at KickAS (NSD: no-starch diet), and researching all you can about diet and inflammatory disease. Tons of info available online these days on this topic, well worth to investigate, and try, in my opinion.
B27+, 2nd Rheumy: 'inflammatory backpain'. IBS + SI/lumbar/thoracic/cervical/knee/elbow stiffness & pain. Managing inflammation very well with diet since Jan 2011. Slow but consistent reduction in symptoms year by year. Haven't seen a physician in years. Took LDN (4.5mg) between 2013-2015, 2018-2019.
|
|
|
|
Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
Agree with Kleb Slayer - I follow reduced starch diet and take LDN 3.25mg. And apart from that the *very occasional* pain med. But is good to have a diagnosis.
BTW - we don't always have a heightened sed rate - only time mine was elevated was due to horrendous drug reactions, fluoroquinolone and MRI contrast dye. (Now left with permanent damage.)
Take care -
MollyC1i - Riding OutAS
|
|
|
|
Joined: Dec 2014
Posts: 202
Second_Degree_AS_Kicker
|
Second_Degree_AS_Kicker
Joined: Dec 2014
Posts: 202 |
Hi elenef,
For AS diagnosis you will need further tests doctors may suspect AS but they will not tell you have AS until the results are ready.
If confirmed treatment can start right away so you are definately on the right track keep us posted.
|
|
|
|
Joined: May 2009
Posts: 492
Warrior_AS_Kicker
|
Warrior_AS_Kicker
Joined: May 2009
Posts: 492 |
Has anyone else been diagnosed with this "unspecified inflammatory spondyloarthropathy"? Anyone else have thoughts about this? About my journey? Greetings! First of all, welcome! I'm sorry that your health issues have brought you to us, but hopefully the information and experiences shared on this forum will be as helpful to you as it was to me. I have a similar diagnosis - undifferentiated spondyloarthopathy. Basically, I had all the hallmark symptoms of AS but my x-rays and MRI were clean so I couldn't receive the official ankylosing spondylitis diagnosis. My inflammation markers were elevated, but not as crazy high as I've seen in many of the cases here. I was however, pretty much a stone's throw away from being disabled. In all likelihood, I believe I was in the early stages for ankylosing spondylitis and had I not been able to get my inflammation under control, would have suffered the fate that many people here have. The name of the game is controlling the inflammation. There lots of different ways to do this, so you'll just have to find something that works for you, and is a path you want to go down. As for me, at the time of diagnosis, my rheumy prescribed me some NSAIDs to manage the inflammation. I told him that I had tried NSAIDs and they didn't help. That was all he could offer me at the time so I felt I had to try different approaches. Without getting into a long drawn out story about everything I tried, I can say that I am eternally grateful for discovering the NSD section on this forum. At the end of the day, a very strict diet was able to get me back to being pain-free / asymptomatic. I am not cured because even 6 years later, if I slip on the diet, the symptoms start creeping back. The collected experience and wisdom on these forums can be truly helpful. You just have to sift through and figure out what's right for you. My only suggestion is to post your experiences and don't be afraid to ask questions. The community benefits from having people share their experiences and everyone chiming in. Managing this illness is a war, not a battle. So be prepared to slog it out. Good luck!
"But I also have to say, for the umpty-umpth time, that life isn't fair. It's just fairer than death, that's all." -- from William Goldman's _Princess Bride_
|
|
|
|
Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Hello and welcome My Dx is "undifferentiated spondyloarthropathy" too. It took me 12 years, 5 rheumies, and almost disability to get a dx and treatment. I finally spent my own money, flew to another city in another state and got dx'ed by the author of the medscape article below because I felt he was most knowledgeable about undiff spondy which is what I thought I had based on the symptoms. He agreed within a minute of talking to me that I had a spondy. Spent an hour with me to determine which one. and agreed that undiff spondy made the most sense. He told me that he thought it took so long to dx me because: 1) I had such an extreme case of enthesitis that other doctors didn't think spondy could do that, but as many here know, it can. 2) I flare (which is typical of autoimmune / autoinflammatory diseases). but I had to find doctors that believed things that they didn't see for themselves. For example, when my SI would flare at its worst, I couldn't go to a doctor for them to see, I could barely move between the bathroom and the bed. But this doctor didn't have to see it to believe it. For me it doesn't matter which spondy they call it because I was approved for Humira and I am a poster child for it. It works amazingly well. I still flare, but not like before Humira. Its given me my life back. I almost had to give up my career and go on disability. That has changed. I will always have the "damage" that was created by all that uncontrolled inflammation (like the bone spurs in my neck (seen on MRI) and the damage in my SI joint (seen on CT), but without the added inflammation, its much more tolerable now. I still do lots of other things to manage my disease, see below my name. But now its not a losing battle. Now those things actually help. and here's the article. I think its the best at explaining the difference between the various spondys. http://emedicine.medscape.com/article/332945-overviewIf you have a doctor who will treat the undiff spondy as aggressively as AS, then it doesn't matter which the dx is. I had to find a rheumy who understood that undiff spondy isn't a "milder" form or "not as advanced" form of spondy, but a different beast with its own issues. For me that is / was severe joint inflammation at the entheses and GI inflammation. Do you have gastritis or a history of ulcers? Do you have bouts of unexplained constipation and/or diarrhea. I pretty much had the constipation my whole life and didn't realize I was abnormal until I hit 30, got the gastritis (doubled over in pain from it) and went for a year where I didn't digest my food and had diarrhea and mucus in the stools...very crohn's like without being crohns (which ironically my stepfather, who I am not related to, has). Well, now with a dx, hopefully a successful treatment will follow. before i could try the humira, i had to try a few nsaids (3? 4?)....I told my rheumy that was not a problem because over the course of those 5 rheumies before him, I'd tried every class but dichlofenac. We bypassed SSZ because I have NAFLD due to diabetes and SSZ can be hard on the liver. Thus I got an express pass to humira. Good luck with everything and good to meet you.
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
|
|
|
|
Joined: Mar 2015
Posts: 13
New_Member
|
OP
New_Member
Joined: Mar 2015
Posts: 13 |
thank you all for your responses!
so is the bottom line that being dx USpA or AS doesn't really matter because the treatment plan is pretty much the same?
I do plan to ask the Rheumy for a HLAB27 test---just to know. and i am currently on Meloxicam, but I don't feel like it does anything. I am ready to try something else.
@Sue22: I have had an ulcer before, although a very very long time ago. and I have also had some bouts of unexplained constipation and/or diarrhea. but rarely. does that matter?
my trap muscles and inbetween my shoulders blades are off the charts. i try to go to a massage therapist when it get intolerable and it would be great to go one of these times and the therapist DOESN'T say: "WOW. your muscles are SO tight."
I have also tried to make some changes in my eating, to lean towards some anti-inflammatory foods. although i am terrible at strict diets, but i am trying. anything to get some relief.
------ Female / 43 yrs old ~ Pain started in 2000 ~ dx w/Cervical Myofascial Pain Syndrome in 2003 ~ dx change to USpA in Feb 2015 ~ HLA-B27 negative Currently taking Gabapentin 400mg/nightly, Meloxicam/daily, MTX/weekly, Folic Acid 3mg/daily, and Flexiril & Norco only when absolutely needed. *I am in the approval process for Humira.
|
|
|
0 members (),
127
guests, and
83
robots. |
Key:
Admin,
Global Mod,
Mod
|
|
|
|