It makes it confusing to tell if meds are working
I have ankylosing spondylitis and fibromyalgia, I have a hard time telling which pain is which?
Question posted by mkaym12 on 13 July 2013
Last updated on 2 January 2020
I'm 29 and I was diagnosed with Ankylosing Spondylitis in Jan 2017, and just diagnosed with Fibro, too, about a month ago.
They've put me on every kind of NSAID and DMARD imaginable, to no avail. Most recently, the Rheumatologist (the second one I've seen) more or less me onto HUMIRA ~3mos ago (despite my severe needle phobia) and told me it was my last option.
When I saw her about a month ago, she didn't seem to believe me that symptoms hadn't gotten better. I told her, in fact, many of them got worse... but she said she wasn't willing to give up on the HUMIRA yet. She also said, outside of the lower right back pain (SI), all of the other terrible, crippling symptoms are fibro-related...
BUT she wasn't willing to give me anything to help manage the fibro. She told me to go get acupuncture and cognitive behavioral therapy (+ keep taking the HUMIRA + Sulfasalazine + Naproxen + folic acid--JUST for the AS. The first time I saw her she said she thought I might have fibro, too, but that "we'll worry about that at our next appt."
Over the past month or so, the "all over" pain has gotten much worse, the trigger points are unbearable (my left shoulder/rotator cuff feel like they're burning and just lifting my arm over my shoulder makes me cry), I'm absolutely exhausted all the time but can't sleep because of the stress, pain, and because I wake up with numb/tingly hands and feet. My whole body will tense up but also spasm at the same time. I feel like I've lost strength in my hands, my visions been getting blurry. I go from really hot to really cold (shivering) by turning the thermostat just 1 degree... and there's a lot of other symptoms, too.
It's really hard for me to discern which of these are tied to which condition, or are flare-ups set off by any of the meds... I just feel horrible and can't seem to get answers. Does anyone else have these types of symptoms? Have they worsened/improved with certain methods of treatments?
I have both was diagnosed with AS first in 2009 then fibro 2 years ago, at times I can't differentiate what pain is what! I am on Salazopyrin 500mg and Pregabalin 75mg, I have had Humira, Enbrel and Simponi injections and none of them worked for me, I didn't feel any relief from any of them, in fact my condition seemed to get worse. I developed a very serious DVT when on the Simponi along with multiple PEs in my lungs and while they can't say the Simponi had anything to do with this, they couldn't rule it out either! I'm now just back on my meds again, I've also been paying privately for acupuncture which gives me some relief from the pain. As for sleep, I can't remember what that is!
I think AS came first with me. I remember when I was 24 feeling such a terrible pain in my hips that just wouldn't go away no matter what. Then later, all my muscles started to become stiff and sore and painful to touch. Massage never helped. Then I started with the sleep problems. I haven't slept properly for 15 years and that is making everything so much worse. I am looking at a diagnosis for narcolepsy because I have major troubles with dreaming and sleep paralysis and hypnopompic hallucinations.
I sympathise with your work situation. I feel like I save every scrap of energy I have to go in and work and then just come home and die. That's not a life! I can't even take care of myself. My mother comes a few nights a week to help me cook and clean. I also have just confronted the fact that it looks like I won't ever be having children. I'm single, 36 and I have no way of trolling for boyfriends in the state am I in. Not to mention no partner would willingly want the burden of AS/FM and I can't raise a child alone. The realisation that having a child is a long shot (confirmed by my doctor and now my mother too, whom I thought would never give up hope of love for me) has crushed me a bit. Now it seems I will be giving up my career too as I am not fit enough to have a life and work. I feel as though there is just no end to the things that are taken from me. Sorry to be a downer. There is this guy at work who complains bitterly about his life and it drives me crazy. This guy came from a wealthy family, is good looking, has a beautiful, strong and intelligent wife, they both have high paying jobs, he has a daughter who is cute and perfect and he goes on European vacations with his family and drives a Beemer. Oh and he's in perfect health. What does this guy have to complain about? I, on the other hand, suffer silently, work harder than anyone else and try never to let my conditions affect anyone. It makes me so upset that he was so lucky in his life and I got so unlucky in mine. Then he gets to rubs my face in it day after day? Where's the justice? And to top it all off, the day my rheum told me I had AS, I came back to work and tried to hold it together. That b"@$rd actually confronted me the next day and told me that my crying at work made him uncomfortable and that it was extremely unprofessional of me.
Crap. I've done it again. Being a downer. Sorry. Just a rough time for me.
I have both as well. I have just been diagnosed with AS and the FM diagnoses was last year. It does make it difficult to separate pain, especially when it comes to treatment. I am conflicted as to whether or not I should pursue biologics with the risks associated if it will not take away all my pain. Why not just go on pain management and then just treat all my pain without risking all the side effects of biologics?
I've Fibromyalgia and Spondylolisthesis, which causes horrible stinging, burning neuropathy. My heart goes out to you, so painful indeed!
I too have a difficult time differentiating what is causing my Hair-Afire pain.
May I ask what meds you are taking, what has worked and what has not? That info may help others to answer your question.
I've found that the deep muscle pain is the fibro and the spondylolisthesis is causing the neuropathy, in my situation. Fibromyalgia symptoms seem to manifest themselves so differently in each of us, would you agree? Also, which one presented first? Was it the fibro and do you think your ankylosing spondylitis may have actually caused the A.S.?
I do apologize for asking so many questions! The more info we have, the better.
Best wishes to you,
I think i can help you... fibro is more fatigue dull all over pain where spondylitis you will feel in hips, lower spine neck area... it is more intense.
The fibro hurts where things touch you..spondylitis hurts all time and more intense downright pain.
I have both too... though wonder if rheum just diagnosed me with fibro since they go with lupus... he did not due any x rays nothing to see why i was having a lot more pain all over my torso. Now was told i have AS throughout my spine so again... could have been slowed down... this would be 2nd major mistake that rheum made with me!! he refuses to see me due to his 1st mistake
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