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Newbie with no diagnosis- looking for advice #280381
05/17/18 12:52 PM
05/17/18 12:52 PM
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Haley Offline OP
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Hi all,

I’m a 29 year old female; 5’4”; ~120lbs. I don’t have a diagnosis, but I’ve been experiencing chronic pain problems which I’ve grown more concerned about. Of course, I’m not looking for any sort of diagnosis, but I am hoping to get a better idea of what people suffering with AS experienced in the early days, pre-diagnosis. All I have right now are two x-rays showing a “normal spine” and some sclerosis in my SI joints. I don’t have the finances at the moment to return to try and get an MRI. In the meantime, I’m trying to do some investigative work and find out more about AS and similar conditions. I don’t know what’s happening with me, but I know it’s not in the realm of “normal.” Any advice or information you are willing to offer would be greatly appreciated.

For the past several years, I’ve had off and on flare-ups of what I believe is SI joint pain. The pain is always on one side at a time and often switches sides overnight. It can last anywhere from one day to several days. I never have been able to pinpoint anything which could set it off. It seems to come and go at random. It is usually worsened when putting weight of the affected side and/or stretching or moving in a certain angle which elicits the pain, and it limits my sleeping position to my back. Sleep generally tends to ease the pain, and it is worse at night/as a long day progresses. Lately, I only get these flare-ups every few months or so. My most recent was last week. The worst it has ever been was a couple of years ago when I had a flare-up the day before I was supposed to fly out of town. I was home alone and could barely make the 20-ish feet from my bed to the bathroom. The pain was extreme and made walking difficult. I wasn’t sure I could make my flight, but fortunately it eased up enough the next day to get me through.

NSAIDs help to a certain degree, depending on how severe the particular flare-up is. I had never heard of the SI joint until I visited a doctor in winter of last year. She suspected that might be the cause of the lower-back/buttock area pain I was describing and ordered x-rays of my spine. The x-rays were viewing my spine in general, but with a “sub-optimal” view, showed signs of sclerosis in my SI joints. The doctor said my spine looked fine otherwise.

The reason I went to the doctor in the first place was not for that pain, but for a new pain that started in summer of 2017. I was overseas for about a month, and I started having a dull pain and stiffness in my mid back that was disrupting my sleep. I thought it might be the very firm mattress paired with the lack of air conditioning and the relentless mosquitoes, but this pain has continued. In particular, the pain happens every single night (except for a couple lucky ones I’ve had). At first, it was waking me up every night. Now I wake up fairly often, but I feel like my body is gradually getting used to sleeping through some of the discomfort. I used to be an excellent sleeper, able to sleep in many positions, including cuddling next to my boyfriend or resting my head on his chest. These positions now guarantee I’ll wake up in the wee hours with even more discomfort. Sometimes, instead of starting after I’m asleep, I feel it coming on late at night. Last night I had some discomfort in my upper back, sort of feeling like a pulled muscle. Gradually it developed into general soreness and stiffness. This was paired with a soreness in my chest (middle breast bone area) and back ribs upon deep/high inhalation. I did some foam rolling and yoga stretches in the hour before bed. These provided a tiny improvement, but the soreness and stiffness last night was worse than any of the several previous. I find this is often the case when I attempt to be proactive with this pain. (Side note: I’ve tried sleeping in all different positions, different pillows, and switching mattresses. Sleeping on my back and at an incline seems to help a little. Otherwise, nothing made a difference.) The doc prescribed Meloxicam. I took it for several days but didn't feel any improvement. I still am clinging to the idea of avoiding daily medicine. I do take Aleve on occasion, and it generally helps, but doesn't erase anything.

As for my days, they are relatively normal. The pain seems to subside about 1-2 hours after I wake up and start moving. I do get stiff in my lower back, and I try not to stand in one place for too long. Doing something like shopping for clothing or attending a concert can set-off a tightness in my lower back that often results in a good “crack” when I intentionally twist a certain way. I do have the occasional chest soreness. One day recently it was bothering me to the point that I started to wonder if I had some kind of asthma issue. I also live in an area with extreme allergen issues, and I am a classically trained singer, so I’m really sensitive to breathing.

As I write this, I’m waking up and waiting for the stiffness to subside and to feel relatively normal. A deep inhalation elicits slight soreness and tension in my chest and upper back. I woke up around 5am in considerable discomfort, arranged my pillows as I usually do when this happens, and turned on the heating pad.

I hope this gives a decent idea of what I’ve been experiencing. If anyone has input, questions, comments, anything at all- please feel free. I really appreciate your time.

Re: Newbie with no diagnosis- looking for advice [Re: Haley] #280382
05/17/18 01:30 PM
05/17/18 01:30 PM
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Winston Offline
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A couple of suggestions: (1) Take the NSAIDs, doesn't matter whether it's the Meloxicam or Aleve (naproxen), continuously for at least 2 weeks and see if your symptoms improve. Always take NSAIDs with a big meal to reduce the chances of gastrointestinal issues developing. That's the first thing a doctor is going to tell you to do because NSAIDs work most effectively when they've built up in your system. You can't really know if your disease will respond to them (and if your symptoms are caused by some inflammatory condition) unless you've done that. (2) See a rheumatologist. Some of what you're experiencing sounds like AS or a related disease, but some doesn't. You need some bloodwork to rule out other potential causes. Typically, a rheumatologist (and even a GP) would order an autoimmune panel to test for rheumatoid factor (to rule out rheumatoid arthritis) and ANA (to rule out lupus and some other things), tests to look for signs of inflammation or infection in your blood (CBC, sed rate, CRP), and the genetic test for HLA-B27.

Everyone's AS is different. Mine started with lower back pain that I experienced, initially, first thing in the morning. Slowly over a period of about 18 months that back pain got worse and began waking me up during the second half of the night and then began to bother me later in the day when I had been sedentary for too long. My first true flare began after I experienced some lower back trauma (a fall). At that point I felt sick -- I couldn't digest food, had a mild fever at times, developed pounding heart palpitations and shortness of breath. There was no question in my mind at that point that there was something terribly wrong with me. My rheumatologist called it AS at my first appointment, although he couldn't technically diagnose me with AS until almost a year later. Note that my xrays and MRIs of my SI joints and lumbar spine were normal and remain normal today. It sometimes takes years for AS-related damage to show up on imaging.

Last edited by Winston; 05/17/18 01:32 PM. Reason: left something out
Re: Newbie with no diagnosis- looking for advice [Re: Haley] #280383
05/17/18 02:44 PM
05/17/18 02:44 PM
Joined: Mar 2013
Posts: 2,007
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SouthernMoss Online
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Winston has given you excellent advice. I would suggest taking a hot bath or shower before bedtime. The foam roller and stretches are good, but be sure to do them very gently when you are in a flare. It sounds like you may be pushing too hard. A hot shower or bath and gentle stretching are also helpful in the morning to help you loosen up and get moving.

My AS started with low back pain in my late 20's. As the years progressed, my back would feel "creaky" in the mornings and it was difficult to bend down enough to step into pants, so I had to sit down to get dressed. In the early years my back would be fine once I loosened up, but as the years progressed it would also hurt if I did too much. My knees started hurting in my early 40's. I thought it was osteoarthritis like my mother and that nothing could be done, so I never went to a doctor. My right elbow was next, causing pressure on the ulnar nerve. Then my eyes got involved. It was the repeated eye problems, plus a 5 month flare of tendonitis in my right elbow/forearm that finally had me really start looking for answers. I visited a uveitis forum where I learned about the HLA-B27 antigen. I asked my GP to run the HLA-B27 test, which came back positive. I then went to an ocular immunologist, who ran a lot more tests, all of which were negative/normal. I then went to a rheumatologist. She diagnosed me with spondyloarthritis on my first visit based on my history of back pain and uveitis. Like Winston, my SI joints were normal in x-rays. I have never had an MRI.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Newbie with no diagnosis- looking for advice [Re: Haley] #280384
05/17/18 03:20 PM
05/17/18 03:20 PM
Joined: Apr 2016
Posts: 47
Boston, MA
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Miguelito Offline
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Hi Haley. I must say that your description of your symptoms is very similar to what I went thru in my mid-thirties with my AS. I don't think you mentioned Uveitis/Iritis, but if you get that it's somewhat dispositive.

The ribcage and upper back pain is, to me, an under-cited (and debilitating and under-appreciated) hallmark of this disease.

I don't think you mention your hips, but make sure they've been x-rayed. There are things that can be done there surgically short of joint replacement if caught in time. You mention side of leg pain (I think); this, groin pain, and lower back pain are often referred hip pain.

The only way I can sleep (generally) is the three pillow method on my side; one under my head, one between my arms, and a long-pillow between my legs.

If working at a desk, I recommend a stand/sit desk (and kneel occasionally, on floor, or on chair), plus a footrest to take strain off lower back. Mix it up frequently.

If you find your butt starts to hurt from sitting on a harder surface (think subway), I think that's from fusing (or fused) SI joints. Get one of those gardening foam kneeling pads to sit on.

I generally try to limit my comments on a female's thread (as I believe men's and women's bodies are very different), but your symptoms are very similar to mine at a similar age.

Mike


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
Re: Newbie with no diagnosis- looking for advice [Re: Haley] #280412
05/21/18 04:34 PM
05/21/18 04:34 PM
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Haley Offline OP
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Haley  Offline OP
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Thanks everyone for your replies. I've also put the same information on a Facebook group, and have received much the same kind of responses. Generally, it seems as if my next step should be a Rheumatologist. And thank you Winston for the input about the NSAIDs. I guess its a difficult transition because I hate the idea of taking something so regularly, not being able to enjoy the occasional drink, etc. But also it makes me nervous that it will mask the development or pain I'm experiencing and make the situation not seem as urgent as it feels right now. But it's true- maybe I didn't give the Meloxicam enough time to do its thing.

Re: Newbie with no diagnosis- looking for advice [Re: Haley] #280413
05/21/18 05:13 PM
05/21/18 05:13 PM
Joined: Apr 2016
Posts: 47
Boston, MA
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Miguelito Offline
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Not recommending this, but...I took NSAID's every day for 35 years (mostly Indocin/Indomethacin) and drank plenty of alcohol during that time and, knock on wood, do not appear to have suffered any lasting side effects.


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
Re: Newbie with no diagnosis- looking for advice [Re: Haley] #280414
05/21/18 05:41 PM
05/21/18 05:41 PM
Joined: Jun 2016
Posts: 405
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Winston Offline
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Chronic inflammation will shorten your life. It damages organs. It damages blood vessels. It's been linked to common types of cancer. You've got to get the inflammation, if it's there, under control. You can still enjoy the occasional drink while taking NSAIDs continuously. Perhaps you are thinking of Tylenol, which is deadly for the liver when combined with alcohol. Because of the way NSAIDs are metabolized, they, in contrast to Tylenol, rarely damage the liver. Of course, stay within the medical guidelines -- no more than one drink a day for women, two drinks a day for men -- for overall good health (and because drinking alcohol excessively over a long period increases inflammation).

Last edited by Winston; 05/21/18 08:19 PM. Reason: typo
Re: Newbie with no diagnosis- looking for advice [Re: Haley] #280425
05/23/18 01:51 AM
05/23/18 01:51 AM
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Whidbey Island WA
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WhiteCell Offline
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Life throws us curves. Find out if one has come your way. Depending upon your location, find a highly respected Rheum.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~

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