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Severe back pain, unable to sleep #282120
11/23/18 08:10 AM
11/23/18 08:10 AM
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SparkleSparrows Offline OP
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SparkleSparrows  Offline OP
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Joined: Sep 2018
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A few things here that I need help with. I'm 30F.

First of all, over the last few months my back pain upon sleeping has gotten worse. The last week I can barely get any sleep at all. I've been sleeping on a heating pad on my couch just to get any rest at all. The pain can be quite severe to where I'm in tears. Please give me some advice, I'm so sleep deprived I can barely function.

Also, I don't have health insurance. I'm working on getting it starting in January. As such, I've not been officially diagnosed. But I do have many changes seen on the xrays that I have had. First, osteitis pubis for years. Which led to a bone infection in my pelvic joint. Most recent xray showed my left si had fused. I haven't had any back xrays yet.

I live in Oregon. Are there any specific doctors I should seek out for diagnosis and management? I won't have insurance for a couple months but I'd like to get the ball rolling.

Thanks,

Re: Severe back pain, unable to sleep [Re: SparkleSparrows] #282121
11/23/18 05:13 PM
11/23/18 05:13 PM
Joined: Jul 2006
Posts: 6,610
New York
Banana Online
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Banana  Online
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Posts: 6,610
New York
Very very sorry you can't get to a doctor. When I wasn't getting diagnosed, I paid $600 (early aughts) for a doctor like House and $400 for follow up. It took me a couple months to pay it off BUT it was worth every penny. Why? Because he was a famous Rheumy and his word was gold (he did not take insurance). At the second visit, he turned to my husband and said "Your wife is the reason I don't retire, I am sorry she suffered so long".

Anyway, I bring that up because no matter no insurance you MUST see someone. Aren't there clinics? Can you borrow the money? A lot of damage, permanent damage can happen. Plus not sleeping, you could be in a car accident or hurt yourself because of that.

I strongly recommend finding a doctor that will be on your insurance plan in January, or when you start and see that doctor now. Bring your records showing x-ray damage and maybe that doctor can start the process. One of the problems is, it can take months to see a rheumy, esp new patient. If you wait till your have insurance it could be months more. Couple months from now could be too late as far as damage goes, I beg of you to think of that.

Finally, you can take NSAIDs which will help but again, taking a lot needs to be monitored by blood tests.

Sorry, I esp worry about how you are sleeping, fusing can happen. The instructions are to sleep flat on back or stomach (if you can) is even better. Without pillows to prevent bending/fusing of neck/back in wrong position. It is very very serious.

Hope I didn't scare you, just trying to get you to get help.


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Severe back pain, unable to sleep [Re: SparkleSparrows] #282145
11/27/18 12:45 AM
11/27/18 12:45 AM
Joined: Jun 2012
Posts: 560
Los Angeles, CA
RAHMBA Offline
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RAHMBA  Offline
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yes, some good docs in Oregon.
Dr. Atul Deodhar rheumatology
Dr. Mark Asquith rheumatology
Dr. James Rosenbaum Ophthalmology

oregon health sciences university in portland.

hope that helps,


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Severe back pain, unable to sleep [Re: SparkleSparrows] #282147
11/27/18 02:51 AM
11/27/18 02:51 AM
Joined: Oct 2018
Posts: 11
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person42 Offline
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person42  Offline
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if you know which medicine you need , you can order online on an international website like this without a prescription and it will cost you a fraction of what it costs here in usa
http://alishech-vmc.net/en/dietary-vitamins-antidotes-hormones/1310-prednison-5-mg-30-tabl.html
but it is a risk for sure, there are many websites like this, so do your home work.

Last edited by person42; 11/27/18 02:52 AM.

My name is Stan. I live in Philadelphia, United States. I am 42 years old father of one beautiful kid and I work as a software developer. I speak English and Russian languages.
HLAB27-, CRP-, ESR-, Lyme-,Xrays-, ANA-, HSV1+. HSV2+
Re: Severe back pain, unable to sleep [Re: SparkleSparrows] #282152
11/27/18 04:28 PM
11/27/18 04:28 PM
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SouthernMoss Online
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SparkleSparrows, I'm so sorry you are in such pain. When back pain used to wake me up in the night, I would get up and do some cat-cow stretches. To do those, slowly arch your back like a cat while lowering your head and tucking your butt. Hold for a few seconds. Then slowly lower your back into a sway-back like a cow, raising your head and rotating your tailbone up. Hold for a few seconds. Alternate between the two several times. The "cow" always felt especially good to me.

I recommend that you find a rheumatologist now and set up an appointment. Unless you get extremely lucky, you will not be able to get in before January anyway, since there is a shortage of rheumatologists in the US.

Keep us posted.


Ginny - 58 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: Severe back pain, unable to sleep [Re: SparkleSparrows] #282171
11/29/18 07:35 PM
11/29/18 07:35 PM
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Deirdre Offline
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You might try sleeping on the floor over a thick blanket. I slept on the floor for years before diagnosis. Also sometimes laying flat on your back on the floor for ten or twenty minutes helps release some tension. Try to find a doctor who knows AS for an easier diagnosis. If you can tolerate nsaids google the dose for AS for what you are taking and try that. Before I got in to the doctor I was taking Advil every few hours for the pain.


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