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
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6 Answers
KSDSoFL
9 July 2017
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?
Jeginathol
9 July 2017
I understand your pain so well. Fibro is not for the faint of heart. Early on in my Fibro journey I found the "guaifenesin" protocol. There is a book by Dr Paul StAmand called "What your Dr won't tell you about Fibromyalgia". I found relief over time... truly it is the only thing I've tried that did. It's a bit tricky though... you have to change everything that touches your skin (shampoo, body wash, toothpaste, makeup and lotions) to salicylate free versions. It's worth it all. It takes a few months on it to start to see good days, but when you get your first one it's just amazing. I was on it for about 8 years and I felt pretty good most of the time in comparison to before I started. I stopped it as my Dr wanted me to try herbal supplements and you can't take them on this protocol. I'm going to restart it soon. It's worth a try for the pain and fatigue you describe.
shaz1972
7 Sep 2016
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!
Wib1970
24 Dec 2016
I have been reading many of the posts with great interest. I have been diagnosed with fibro, but not AS, I am talking with an AS member and she is of the view that I have AS. I am 45 and have had back problems since age 20, lower back, the recent MRI did not show inflammation but my whole spine does show disc degeneration and my clerical spine is the worse with bone spurs, the pain is chronic in my neck and upper back where the damage is showing on my MRI, and my feet and ankles have problems. The muscular pain I feel is due to where the damage is to the spine and neck... I live abroad and whilst they have heard of AS they have no specialist here. I don't want to have AS but would like a proper diagnosis as the pain is not just muscular
Jeginathol
9 July 2017
I have just been diagnosed with DISH. It was either this or AS as my thoracic spine is fused. Some believe DISH is autoimmune, but research hasn't caught up... sure feels like it. I've had Fibro for 21 years. I take Lyrica 75mg twice a day. 5mg Ambien, 5 Mg Sonata and 150Mg of Trazadone for sleep. 5 mg of Lorazapam as needed as well for sleep. I can't take anything narcotic after 2PM as it disturbs my sleep as well. I also take Celexa... a nonsteroidal once a day. Between the 2 conditions, I'm in quite a bit of pain. I miss using a pillow at nite, and sitting comfortably in any chair. Anyone know of any good exercises for midback pain? My heating pad and massager have become my constant companions... lol. God bless all of you who struggle with multiple conditions.
Akshunhiro
16 March 2014
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.
mkaym12
16 March 2014
I don't think you are being a downer at all, as far as I am concerned if we can't express our frustrations and emotions here than where can we? I am sorry that you got the AS diagnosis. I have been on Humira for over 6 months and I think if my job wasn't so physical I would notice a big difference. I do notice less pain and I am able to get around better after a day at work, but unfortunately still not much energy (will be getting a sleep study soon) I am still hopeful to get some of my life back some day, just hoping I'm not too old to enjoy it! I am here if you need a friend, I really haven't been able to get across to anyone else what this feels like. It has now been suggested that I get breast reduction surgery to help with my back pain. Yikes! What next?
Jeginathol
3 May 2017
Are you taking Ambien? I had sleep paralysis and hypnotic dreams. I was taking 10 mg of Ambien and by cutting it in half it stopped those symptoms. I'm in the process of getting diagnosed with AS. I've had Fibromyalgia for 21 years after it was triggered with a fall at work that injured my neck. An X-ray done by my Chiropractor who has struggled to get me out of pain, shows fusing in my thoracic spine. This all has me pretty freaked out to be honest with you. My Fibromyalgia has always been very bad accompanied by myofascial pain syndrome, fatigue, all over body pain and disability. Now this...
Things that have helped me are massage, chiropractic, acupuncture, cognitive behavioral therapy, a spa tub, and moving everyday. I don't work due to the injuries and subsequent Fibromyalgia from my work related injury. I try not to allow pain rule me. My then 14 year old daughter once said to me "Mom... YOU are not Fibromyalgia". It was a wake up call that I had lost myself. Every day in every way, I was concentrating on my illnesses and not on things that sustained me, things that were important to me. It sent me on a spiritual journey to make sense out of all of it. It was primarily a 2 year journey, but it doesn't really end. I started reading as much as I could get..listening to signs around me on what books to read. Amazon used books made it all affordable. I looked at all religions, all supernatural phenomenon, and avoided Fibromyalgia books. My favorite subject was near death experiences. I myself had 2 in my life, but I never really dealt with them. My conclusions are that there is life after death, that I am a spiritual being having a human experience, and God is always with me.
There is a plan... it's not our human plan. There is an old saying that man plans and God laughs. You just have to figure out how to work with God. Nature is cruel... very cruel.
I wonder if anyone has tried a ketogenic diet to reduce inflammation? What kind of medicines did you try first? I'm a bit apprehensive about the injectibles as they have very serious side effects. I had a peptic ulcer (2nd NDE) hemhorrage from NSAIDS. My options may be limited as far as oral meds go.
What kind of Dr diagnosed you? My Chiropractor did X-rays and he sees the fusions in my thoracic spine where I have acute pain. I'm praying it's not AS, but there isn't much else that fuses your spine.
Anyway, thanks for listening
Dmls
30 Oct 2017
I’m sorry to hear about your not having children. My children were in high school when I first started with pain and I feel like I lost some of the ability to do a lot of those precious memories. I’m just so sad they had to deal with a sick mom. Best thing I ever did was start with a pain Mgmt doctor. He believes me that I have extensive pain!!! I have a question for all of you on here. After a day of activity (I.e. antiquing with my husband), I’m completely wiped out the next day. Does this happen to ya’ll too? I no longer work and am on disability from my job as a state legislator and can only volunteer.
TiredOldBonezzz
29 Nov 2017
I too, am wiped out after doing anything! I can barely work 2 days in a row. My body just can’t recover.
I’ve had fibro for 4 years. It’s manageable except when I have flare ups. I’ve had weight gain due to less activity. This has caused worse problems because I find that it brings on more pain which leads to more meds. I can’t get enough rest. I wake up feeling like I’m 80 years old. My feet, ankles, knees, hips, back, neck, now even my hands hurt so bad and are so stiff when I get up.
I recently got diagnosed with AS. I figure that’s the main culprit for all my joint pain and stiffness. Years ago, I was diagnosed with first one thing then another. Over time, I’ve been diagnosed with TMJ, Epstein Barr, Costocondrytis (pitiful spelling) Hypothyroidism, Fibromyalgia now I have AS. I’d love to know if all the diagnosis from years prior are related to the new diagnosis.
I’m happy to finally have a Dr who has taken me seriously. I’ve complained for so long about pain and stiffness and my symptoms have been all over the place. Drs, family and friends have made me feel as tho I’m having such bad anxiety that this is all in my head. I’ve been on so much Gabapentin, Muscle relaxers, Tramadol, and all kinds of anxiety meds that they began giving me terrible side effects that were similar to MS. Brain fog from Thyroid and all this additional medicine for Fibro has me feeling so out of touch with who I truly am. I just want my life back so I can enjoy being the wife and mother my family deserves.
Akshunhiro
16 March 2014
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?
Polymorph
2 Jan 2020
The biologics don’t necessarily relieve pain, though they can help, but the do stall the progression of the disease. The pain is what makes the disease unbearable, but the disease progression is the part that can become life threatening.
MacIntosh12
13 July 2013
Hi mkaym12,
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,
Lara
mkaym12
13 July 2013
The fibro presented first,and I was taking savella, it helped but it was not the wonder drug I was hoping it to be. I could make it through an 8 hour day but had nothing left when I got home. I have only recently been diagnosed with the A.S.and have been taking 1000 mg of naproxen but that didn't help that much so I am now on Humira (actually just gave myself my first injection yesterday) I am hoping to feel like myself again someday, be able to work all day without having to get straight into bed when I get home. I really have a hard time with the fatigue, also don't know which of my ailments are making me feel this way because I haveEpstein Barr as well. Thank you for taking time to comment and ask questions. I just got home from work and my back is killing me!
MacIntosh12
14 July 2013
Hi mkaym12,
Wow, Epstein Barr too? You've got too much to deal with! I bet you are just exhausted after being at work all day! That must confound the situation so much.
Is it possible that you had the AS before your fibro symptoms even appeared?
Just wondering as those of us with spinal problems seem to have fibro, or so I've noticed.
Lara
mkaym12
14 July 2013
I am sure I could have had the AS first, I have had back pain since I was in my twenties it seems. Do you think the AS could have brought the fibro on?
MacIntosh12
14 July 2013
I have a theory, most of the women that I know that have fibro also have some sort of spine or bone problem. I believe (just my opinion) that fibro is a disease that is dx'd by the process of elimination, I just believe that we get a spinal or bone problem first, then it's not discovered and then we are diagnosed (dx'd) with Fibromyalgia.
Do you get me on that? It makes sense that you had back pain before the fibro! What say you?
mkaym12
14 July 2013
Well, they say fibro can be brought on by "trauma" or "surgery", I had surgery right before symptoms of fibro, I just kept thinking and people kept telling me that it sometimes takes a long time to totally recover from anesthesia. At about the same time I got critically ill with what I thought was a stomach virus. I had to go to ER and was hospitalized, they found that I had salmonella food poisoning. It took 3 months to leave my system! Somehow I feel the fact that I could not kick this infection is related in some way to the rest of my problems. It is so confusing... which came first? The chicken or the egg?
Trici
14 July 2013
Every time iread these blogs, I am blown away with the commonality if the events we all seem to share, after I was dxd with brain tumor, then transverse myelitis (spine inflammation, and then fibro I experienced ecoli from a long time uti that I did not know about. Almost died from septacemia. I have had other issues with leg pain so bad and again hospitalized with no dx. Internist found I was being given treatments containing sulfa which I am allergic to ( and this was in my chart). Doing better now but I am so exhausted and waist down hurts so so bad after working and being on my feet all day. I think the hospital floors where I work are the culprit... concrete. Oh and now I have heel spur on my Achilles. Need both knees replaced but just don't think I can voluntarily opt for any more pain at this point. Lyrica cymbalta and hydrocodone only take a sliver of the pain away. It is exhausting just to be this exhausted lol!
Praying for that miracle treatment, oh and a little understanding from my family, friends, and workplace.
mkaym12
14 July 2013
At times I feel like a "little understanding from family and friends" would be the miracle! I also work on cement floors on my feet all day, I know exactly what you mean. I feel like people think I am a drama queen or something! I have a very good work ethic and never call in sick or am late for work, so why am I a drama queen now? I just would like to live relatively pain free and at least have a normal amount of energy. I heard someone say that they believe that fibro doesn't exist and I think I would like to live in their shoes thinking that it doesn't than live in mine knowing that it does
Trici
15 July 2013
At last, someone knows what I am experiencing at work. The first 28 years I called sick 2x(sick child). Now inthe last six I actually am sick. I have been told that I sure am sick a lot. But I still do not call in,it's just the way I have to walk that they have determined this.
Question:can AS be dx by anything other than MRI? Is this what causes the burning fire in my feet and legs?. I have to have another MRI for dr. To measure the second brain tumor (very small meningioma) and wondered if I should mention the possibility of AS so they would view the spine also?
MacIntosh12
15 July 2013
Hi mkaym and trici,
Trici, you just may have what I have, spondylolisthesis, which has caused stinging, burning neuropathy that is SO painful. Spondyl,,, causes a strange gait, ones walk will change, so it may be what you have and an MRI will reveal it.
I certainly hope the tumor is taken care of easily enough, it can't be an easy thing to live with, for sure!
I feel for you both.
I've never had exhaustion before but in the last few months I'm a mess and end up sleeping most of the day and most of the night as well. That's NOT me, I'm high energy and even a nervous energy going on all the time, so this is new for me and finding it stripping my self esteem, can't do what I used to be able to do, can't even cook dindin for my husband and he deserves AT LEAST that much! Ugh, this is maddening stuff.
mkaym, I agree, sometimes an accident or a virus can be the CAUSE of fibro, it usually begins after some type of trauma, right? That's what my doc has said and it rings true in my case as well. Septic situations are very scary, you may have been much sicker than you even knew! Very dangerous indeed.
I suppose the only thing we can all do is stick together, be supportive of each other and be cheer leaders for each other, too. I'm game if you are?!
Lara
Lara
mkaym12
16 July 2013
Thanks Lara, I am finally feeling like someone understands. I was also a high energy and also very happy go lucky person. I don't make many dinners or walk with my boyfriend and the dogs every morning and evening. I am lucky to walk to the kitchen let alone actually cook. I don't tell people how I am feeling, mostly I just say "fine" , people usually don't understand why you look fine, why don't you feel fine?
MacIntosh12
16 July 2013
Wow! We've had entire conversations about the "you look fine, so you must feel fine" phenom round here!! Don't you hate being told that?! Its a compliment I suppose, yet anyone can "look fine" for an afternoon! No one sees us besides our husbands when we are at our worst. Unfortunate but true.
I usually answer "looks can be deceiving." But some people in my own family don't even know that I'm 'under attack' by fibro. They don't care to know, they'd prefer to think that I'm just fine. I don't use a wheelchair, no cane (usually) so everything must be marvy. Ugh. I don't want to explain it and even if you do tell someone that you have fibro and something quite wrong with your spine, they don't want to hear it. They don't want to know how painful it is, how we all live in excruciating pain. I suppose it's because we are loved, right? Our loved ones don't want to know that we hurt quite so badly, or we're so very exhausted.
Keep your chin up!
Lara
lupine
13 July 2013
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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humira pen, ankylosing spondylitis, pain, fibromyalgia
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