Rheumatoid arthritis or ankylosing spondylitis or mixed connective tissue disease or just plain over it


I saw my rheumatologist yesterday.  I do love my rheumy. She is caring and communicative.  She treats me as an equal.  She treats me as a fellow expert, just with a different set of qualifications.

This is how all doctor/patient relationships should be when dealing with a chronic condition.  Mutual respect for eachother’s knowledge and experience.

She’s the theoretical expert. I’m the practical expert.  I live with this stuff every day.  She has the studies, and statistics and wide ranging experience with many similar patients.  Together we decide what’s best for me.

That’s why I felt guilty coming into this appointment, because in the 8 weeks since I saw her last, I reached breaking point and made several decisions without her consultation.  We’ve been going around the same circles for so long, I could predict what would happen at this appointment.  And it felt like I had lied to her.

So.  Firstly. The daily pain had become so unbearable that I couldn’t wait even another day.  I started a prednisone burst the day before my appointment.  So I was feeling considerably better by the late afternoon appointment.  Prednisone was taking effect.  Most markedly on my mood.

Prednisone lifts my spirits.  Prednisone evens out my emotions.  Prednisone normalises my moods.

I know that is entirely backwards, but that’s how it works for me.  As I taper down on prednisone, depression sets in.  I get headaches. I feel dizzy. I feel nauseous and incredibly fatigued.  I have been wondering lately if this is rheumatoid arthritis symptoms returning, or whether I’m experiencing adrenal insufficiency.

I discussed it with Rheumy and she agreed, it’s possible that because I have been on prednisone for several years now, that my adrenals are not recovering and making enough cortisol as I taper down.

So I will need to taper slower this time.  Much slower.   I can go from 25mg to 15mg relatively quickly, but from there it will be 1mg per month.  Because I know that life becomes unliveable at the 12mg mark.  The pain, fatigue and depression kick my butt and dump me on the couch.

Avid readers of my blog will be asking ‘what about your eyes???’

I’m staying in denial on that one.  I have another eye test in June.  I will find out then how the cataracts are progressing.  And if there is any glaucoma.  And I will hope.  Hope that everything is OK with my vision.  I have been dealing with more pain than I can physically and emotionally handle for the last few months.  This is not a light decision, but I have to take a prednisone holiday.  I have reached my limits on many levels.  This is what I told her.

My rheumy asked me if I had been feeling suicidal.  I had to pause.  My honest answer is that many days I feel like my life is not worth living.  I feel this is a direct result of my pain levels, not clinical depression.  When my pain levels are lower, my enjoyment of life increases and my depression decreases.  Shocking revelation that, right???

But I admitted that there are days, that if it weren’t for my kids, I wouldn’t have a reason to keep fighting.  That’s as close as I can get to that subject.  I think we’ve all felt it at some point.  It’s not easy to talk about.

Anyway, back to the point.  I know that some drugs exacerbate depression for me.  Rheumy feels that prednisone is the cause of my mental health issues.  I feel that Humira is a more likely candidate.

As explained in my other blogs, there is a very consistent pattern, post Humira shot.  So the only way to be sure, is to stop Humira.  And see if the anxiety goes away.

I agreed.  Perfectly logical step.  I am on loads of prednisone, so if prednisone is causing the anxiety, the anxiety should continue with a vengeance.

And that’s my second lie.  I didn’t tell her that I’ve already stopped Humira.  That I should have taken my shot a week ago, and I didn’t.  So it’s been three weeks now since I last had Humira. And the anxiety has already abated considerably.  It may return.  I could be wrong.  But the pattern has certainly been broken.  However I do understand that sometimes I talk myself into things.  Sometimes an idea can be a self-fulfilling prophecy. So we will see.  I am to skip the next two Humira shots and then I will call her and let her know how the anxiety has been.

And the third ‘lie’.  I had steroid injections in my SI joints. I did an end run around Rheumy, because she was adamantly against me having those injections.  She felt there was no evidence that my pain was coming from my SI joint, and the injections were risky.

I’ve had shots in my SI joint before, and confirmed sacroiliitis, so I was pretty sure.  I know what it feels like. So I went behind her back, and literally begged my GP to refer me to the best spine guy in town.  And the pain relief has been solid.  I still get SI joint flares, but they are mild to moderate. It is no longer crippling pain, to the point where I can’t walk.

So she pulled out my MRI and marvelled at the degeneration in my spine.  She told me again that RA doesn’t affect the spine and I have a lot of mechanical damage, cartilage damage, going on.  But I also have visible, active inflammation on ultrasound.  So she agreed, that Ankylosing spondylitis is a fair diagnosis for me.  And in that context, TNF blockers are the best choice for me.  But I have already failed two TNF blockers, so a different class of biologic should be more appropriate to try next.

I reminded her that I also have synovitis in my small joints, hands and feet, and quite clearly meet the criteria for Rheumatoid Arthritis.  I also have synovitis visible on ultrasound in my hips and shoulders. After re-reviewing my bone scans and ultrasounds, she agreed.  Yes definitely RA.

So.  Seronegative Rheumatoid Arthritis, and one of the seronegative spondyloarthropies.  Most likely Ankylosing spondylitis, considering my SI joint involvement and lack of psoriasis.  There are also the lupus signs – raynauds, malar rash…another consideration.  And sjogren’s.

Different categories of inflammatory arthritis. With different preferred biological treatments.  I have one drug option left.  She admitted she did not know which one to try next.

I love her for being honest about that.  She doesn’t pretend to know everything.  She said she needed time to consider.  So taking a four week break from Humira would give us both time to think.  And for her to review all of my scans and history.

Something that I wish I could say to the rheumies of the world though.  I understand the need, in medicine to ‘classify’ everything.  To diagnose correctly.  To bundle people together into groups, so as to find the best treatments.  And in order to diagnose correctly, we need diagnostic critieria.

But let’s remember this:  The diagnostic criteria are MADE UP by people.  These disease classifications are meaningless in the context of what inflammatory arthritis sufferers are living with every day.  They cause comments like ‘rheumatoid arthritis doesn’t affect the spine, so you can’t have rheumatoid arthritis’.  Of course I can have rheumatoid arthritis and also meet the criteria for another form of inflammatory arthritis that DOES affect the spine.  We’re always told that autoimmune diseases travel in packs, have one, more will likely come along for the ride.  Especially if you’re on the more severe end of the spectrum.  So why is this always met with doubt?

It frustrates me that rheumies try so hard to fit us into the same box as everyone else, even when it’s clear we are all so very different.

Even so I understand why.  Its statistics.  Which pattern are we most like, so which drug, based on past experience and clinical studies, is most likely to work best for each individual.  It’s the best way they can tackle the problem.  So many treatment options.  No way to predict which treatment will work for which patient.

And in Australia, five bites of the biological cherry. No more.  And if you can’t tolerate methotrexate, only three.

Rheumy repeatedly told me that I’m ‘atypical’.  And that I have a lot going on. Yep. That’s true.  There’s a lot more of us ‘atypical’ people out there tho.  We’re all hanging out on facebook cos we can’t get real lives.  Cos we’re in too much pain. And we’re too misunderstood.  But I didn’t go there.

She said my arthritis is non-erosive.  This is good. Yet I have plenty of cartilage damage. And again, this is subjective.  When I had my hips looked at on ultrasound, and my shoulder as well, the radiographer told me he could see erosions.  But he didn’t write that in the report.  And no erosions are visible on x-ray – only cartilage damage.  I asked her about this.  She said in someone my age I must have had lots of injuries.  I said not at all.  My reading says that constant, untreated inflammation will destroy the cartilage first and then the bones.

She said yes, but it doesn’t always progress to bone erosions. So the damage I have now is still termed osteoarthritis.  Even though it is caused by the active inflammation of rheumatoid arthritis.  Hopefully it will never progress to bone erosions.  Hopefully the DMARDs I’m on are enough to prevent the damage continuing.  So she wanted me back on Arava, as even if I’m not feeling pain relief, it is probably halting the damage.

Sounds reasonable.  Except every time I take Arava, my skin breaks out in pustules and little sores.  That bleed.  And look gross.  I look like I have some sort of contagious, festy disease.

The argument for me of whether I would rather have a visible illness or an invisible illness is easily answered when I have that going on.  People stare. People keep their distance. People don’t want me touching anything that they want to touch!

I prefer invisible illness.

Again, she feels that prednisone is to blame for the skin condition, not Arava.  So I have restarted Arava, and we will see what happens.  I hope that rheumy is right. I really don’t want the skin on my arms to break down and crack and bleed again.  It’s gross!

But we compromised.  I need to be on a dmard.  Methotrexate has caused deep depression in the past, and as I am trying to climb out of the depression pit, throwing mtx on the fire seems like a poor choice.

Of course I’m still on plaquenil, but it’s too mild a drug to do anything for me. And it doesn’t prevent bone erosions.  It’s only prescribed for mild RA, or in conjunction with other DMARDs to make them more effective.  On its own, it’s tic tacs.

So in summary, we compromised.  I have to take Arava, but I get to take a break from Humira.  I get a prednisone holiday, which she is not at all happy with, but she understands that I need a break from the pain.  She was more upset at the level of oxycontin and oxycodone I have been taking.

And hopefully over the next four weeks, it will become clear, which side effects are attributable to which drugs.

And then we’ll review everything again.


  1. It sounds to me like you are right. And with that much cartilage gone I would not be surprised if you have erosions like the radiologist mentioned. My foot is so bad now that the doctors now find the xrays very interesting. (lucky eh?) My doctor says he treats the patient, not the Xrays or blood tests

    • Your doctor is a good doctor. In the end, the patient, and how they feel is what matters. My GP once told me you DON’T want to be interesting to your doctor – so true!

  2. My heart certainly goes out to you girl. I am also seronegative, and it makes me wonder if I have the right diagnosis as well. Hell, my doctors can’t even agree. Over a year ago I was on a low dose of methotrexate and I couldn’t tolerate it (it was only 10mgs/week and my hair was falling out at an alarming rate), plus it didn’t seem to help at all. I have been through three rheumatologists and have decided to quit them altogether and stick w/my primary doctor. I love her. She listens to me and I agree that it makes a world of difference. The side effects of these meds are so scary, that I decided to hope that I don’t have rheumatoid disease and that maybe it is just osteo, and not take anything other than tramadol, ibuprofen and my doc also gives me adderall for my fatigue, which helps me tremendously at work. The pain is in almost every joint now, and when I get it on one side, I also get it in the other. It doesn’t help that here in Northern Michigan we are experiencing one of the coldest winters on record (every day almost it is below zero) and it has been humid as well so my joints scream. After hearing your story w/these meds though, I am very reluctant to go down that road…even though I know everybody is different. My back, wrists, hands, feet, ankles and most recently my shoulders have been really giving me hell. I have been doing yoga at least four times a week in the morning before work, and I think that is helping a bit. The stretching really seems to take some pressure off and the practice of yoga puts my mind in a better place to deal w/my pain and the day ahead. The docs can see arthritis near my L5 on my hip I think, I don’t think it’s my L5 itself, although it feels like it. All I know is that chronic pain is a tough cross to bear and nobody walks in anybody else’s shoes. I will keep you in my prayers and hope that you find the right “cocktail” to make it bearable and give you some quality of life. Thankfully, I manage to keep depression at bay; I’ve been down that dark tunnel before and don’t ever care to return to it. I think better days are ahead for you. Patience. Take care.

    • Thank you Marti. The choice of which treatments to try, or whether to go there at all, is a very hard one. I really feel for you. I also still wonder if I have the right diagnoses, because I don’t seem to respond to any treatments, so your words really resonate with me! And whether any of these meds are really preventing damage anyway. But for the moment, I persevere. I’m glad you have a good primary doc. That support is essential to getting through chronic pain.

      I do a class at the gym called Centergy that is a combination of yoga and pilates. I think its one of the most important aspects to my well being. I’m glad yoga is helping you. I bet that some days its very hard to get yourself to that class!!! You are very strong and good for you for exploring all your options, and taking a holistic approach, along with medication. I really hope my experiences are not scaring you away from trying medications that might give you a better quality of life though? As you say, everyone is different. And I know many people who found the right drug combo, and went into remission, or near remission. People like me are the minority…and I feel bad sometimes because I would hate that someone was turned off trying a treatment that could change their life because I had a bad experience. Its a double edged sword, for sure. But if you want to talk more, tell me more about your disease, please do. Maybe it is ‘just osteo’. But maybe not. You sound like you are dealing with more pain and in more places than osteo. I would really like to help, if I can.

      • Thank you for offering to help…I do have some questions. And let’s clear something up: I do the yoga here in my own home…lol. I could never get up early enough before work and get out the door to a class! Also, I wanted to mention that I also take Voltaren gel topically. I put it on the balls of my feet, lower back (I also have scoliosis) and my wrists. Seems to help sometimes. I also wanted to mention that when it gets REALLY bad, I take prednisone too. It really is a wonder drug…too bad it has to have such bad side effects. I knew about the damage it could do to your bones, but your eye damage is news to me. Why can’t there be a drug that make you feel that good without killing you??! I see a chiropractor also. When I told her about the balls of my feet hurting so bad, she scanned my feet and had me fitted with orthotics that I put in my shoes (they even have magnets in them…and cost $130, thank you!). They help a lot. But what helps even more is when she adjusts my feet when I go there…I never knew they could even do that. Wish I could do it myself. Originally I went to a podiatrist and he x-rayed my feet and saw nothing remarkable. I miss being able to wear heels to work. I know that sounds vain, but I do miss it. For me, it was part of being a woman, and at 46 years old, I’m holding onto anything that reminds me of younger days. Don’t get me wrong, I am glad I am still able walk as well as I can. So, if a person has just osteo, does it not affect as many joints? It seems like if I truly had rheumatoid disease, I would be worse. But I suppose there are varying degrees of it. It’s like MS. My sister has that, but she doesn’t have the fast progressing kind. You can’t really tell she is sick by looking at her. Which, of course, is part of the problem. People think if you are smiling and moving at all, you can’t be in pain. So not true.

        I think you are amazing for going through what you are and sharing your story with us. In doing so, you have helped many, I am sure. Thank you for listening and giving us all a place to vent.

        • Sorry for the slow response! Normally I get notified of comments, but I missed yours – really sorry Marti.

          You can have osteoarthritis everywhere, it just sounds very progressive…the way its spread to almost every joint sounds more like an inflammatory disease process. But I really don’t know. I do think you need to be worked up by a good rheumatologist. Even if you have a mild case of rheumatoid, you can take a mild drug like plaquenil. Lots of people have great success with it, and its very low risk. Methotrexate is almost always the first choice, but there are many, many options. It will depend on how severe they assess your disease to be, and if you do truly have rheumatoid.

          Either way, you are clearly in pain, and even a simple anti-inflammatory could help you a lot. Safer long term than prednisone. But I agree – its a wonder drug, but why does it have to have so many side effects!!!???!!! Its a crap shoot. Responding well to prednisone is often a good indicator that your pain is inflammatory in nature. Still doesn’t rule out osteoarthritis though. Your primary sound great, but I think maybe a referral to a different rheumy would be a good idea?

          People who aren’t in pain 24/7 just can’t comprehend. Its not their fault, but its so outside their experience, they just forget. People believe their eyes, rather than their ears 🙂 I hope you have a few people close to you that believe and understand. And keep up the yoga! I’m not motivated enough to do it at home on my own – kudos to you!!!

          • And I thought you were just ignoring me…haha. I was on plaquenil in the very beginning, before the methotrexate and it did work. It really worked well. Except my tummy was so bloated and gassy and upset most of the time. I was truly uncomfortable. I had to choose: painful hands (it was only in my hands then) and belly aches and tight jeans. My doctor (first rheumy) said I should probably go off of it. That’s when I started the methotrexate. Now it’s in hands, feet, ankles, shoulders and wrists…lol. You really do get used to the pain. When I take prednisone and it goes away (mostly) and then I taper off, the pain is so much worse until I get used to it again. Makes you realize how strong we really are 🙂 I have been “worked up” by three rheumys so far and I don’t know. I need someone who listens to me, like my GP. I have to be comfortable w/them and I haven’t found that yet, so for now I will stick with her. She is wonderful. I also know there is only so much she can do. Until it gets worse I guess I will stay put.

          • Fair call. I have a great GP as well – don’t know what I’d do without him. Having a doctor who listens, and you can trust is really the most important thing. Lets hope it DOESN’T get worse, in fact, better! 🙂

          • I just wanted you to know that I had the Vectra test today. My doctor told me that I needed to see my rheumy again because the pain in my feet and wrists seem to be getting so much worse. So I saw her today and she said before she puts me on any new meds she wants to have me do this Vectra blood test. If it scores high, then she will put me on….? Something, but now I forget. She said if it comes back low, she is basically done with me. Really? WHAT ABOUT MY PAIN? Anyway I guess we get the results in 1 week. I actually hope it shows something. If you want, you can email me. Either way, I will let you know how it turns out.

          • This attitude makes me furious!!! Total reliance on one test…its ridiculous! Yes, what about your pain? What about how you’re feeling? If the magic blood test says that you’re fine, you must be fine and she washes her hands of you? So terrible! The Vectra test isn’t even available here in Australia, and I am glad. It takes a bunch of biomarkers associated with RA and runs them thru an algorythm to give you a score out of 100. One of those is CRP, which for me is never elevated. That alone would skew my Vectra results, and that would be true for at least 30% of the population with RA who never have an elevated CRP. So, it is NOT and CANNOT be a fool proof measure of disease activity for everyone. The only foolproof measure is listening to patients! Sorry for the rant…I get very angry about the reliance on bloodwork, particularly for a disease where even the text books say you cannot rely solely on bloodwork. But in your case, I truly hope that your Vectra comes back with a high score, so that you can get the treatment you need. Good luck! Please post back and tell me how you go. Methinks I need to write a post about Vectra…LOL

          • Hi…I just wanted you to know that was me that posted about the Vectra test. I don’t know why it posted without my name. I haven’t gotten the results yet, but I have made a decision. If it comes back with low numbers, I am going to just try to do everything as naturally as I can. I will cut back on sugar, do yoga as much as I possibly can and just continue to take tramadol, Voltaren gel and prednisone when I absolutely have to. I will just hope and pray that I don’t really have it and I don’t wind up with damaged hands and feet….and whatever else it damages. I can sort of understand her position in that she does not want to put me on hard core drugs until she is really sure if I have it. I don’t really want to take them either. The methotrexate I was on for only like 3 months took me a year to recover from. P.S. Methinks you need to do a post about Vectra as well!

          • I think its certainly worth a try…I don’t want to be on the hard core drugs either. They don’t seem to help…and often make things worse. Let me know what your results are? And how you go with the natural approach. I definately find yoga, some light cardio and light weights helps a lot. Its just hard to force yourself to do it, when you’re in pain. Good luck Marti. I hope the vectra results are good.

          • So….you don’t get much lower than 14! With a score like that, you would think I could be dancing in the streets! Honestly, I don’t know what to think any more. Guess I should think about saying goodbye to my good buddy, Sugar. Ugh. Not sure I can. My hubby’s symptoms are getting worse. His knees look like balloons. His last blood work showed nothing unusual either except that he is low in iron and doc thinks he may be bleeding somewhere. So he returns to the doctor tomorrow. He is also very winded lately and I am getting worried now. I think I may leave work and go with him. I want him to have xrays of his chest and/or ultrasound. Our doctor looks at us like we are one big puzzle. LOL. Glad she thinks of us though after we leave her office. Oooh, I’ve also developed a sensation of water running down the back of my leg. Have you ever had that? Sounds like a nerve issue. I see my chiropractor on Friday and I’m hoping she can help. Hope you are feeling better…sending positive thoughts your way! Thanks for listening.

          • Good news about the Vectra! But what really matters is how you’re feeling. Cutting down on sugar is hard, but you get used to it quite quickly. The really hard part is spending more time and effort on food prep, when you cut out all the processed (quick and easy) foods. Worth it though if it makes you feel better! I’ve had a sensation like a spider running down my leg…I often think there’s a bug or something. There’s never anything…I think you’re right…something nerve related.

            Your husband’s symptoms sound worrying. I would go along too. Is he on any treatment? I would insist on scans as well. I really hope you both get some answers. And some treatment that works. Changing your diet and yoga are great places to start. Be interested to hear what your chiropractor thinks? I’ve often had chiropractic recommended to me. But I’m not sure. So good luck to you both Marti, and keep in touch. Thinking of you both xx

  3. In a way I’m lucky, my ESR is always through the roof. My Rhuemy told me in 35 yrs of practice I’m as bad as it gets. But huge success so far with Enbrel, my levels are slowly dropping, but for the first time in years I walk without a walking stick, have started swimming, I can cook and clean my house(although the joy of being able to clean soon wore off, and I remembered I hate cleaning) and I can play with my kids again. I am so lucky, but I live in fear that the drugs might stop working, today is my second day in constant pain, only a five though not a nine, and my hands have started to swell, I have stiffness in my shoulders, knees and hips. Not sure if you can have a flare up on Enbrel, and cause I was in mega flare for three years, I do not have a flare management plan. I wish I could talk your pain and give you a break for a week. Wishing you well, you are always so strong.xxxxxx

  4. It’s funny what rheumy’s will tell you is not attributed to by RA but countless others will contradict. I too was told my spine issues are not RA but possibly AS but tests say I don’t have AS, however numerous other specialists will contradict this and tell you that RA can affect the spine, I’ve also had two strokes caused by heart inflammation and the neurologists said that given the amount of brain swelling and actual damage from the stroke they suspect RA may be responsible for some of the brain swelling especially since I had brain swelling months after the stroke but no tests have been conducted to test this theory but they believe given that it affects other organs there’s no reason to suspect it doesn’t affect that also. I’ve had an anesthesiologist tell me I can no longer be knocked out for surgery in the normal manner because RA has not only altered the curve of my neck but my jaw and some other thing I’d never heard of, Rheumy says it’s not possible but given I’ve had 4 surgeries in two years I’m believing the guy who knows better. I guess what I’m saying is Rheumy’s know a lot but not everything they don’t see the body in ways other specialists do. Trust your instincts.

    • Joanne you really have been through the wringer! so many contradictory explanations…you are right. You know your body best and we need to trust our instincts. No one feels what’s going on in your body, and I can’t count the times when words have been woefully inadequate to explain. have you considered a second opinion rheumy?

  5. I feel so much for you having to choose between possibly your eyesight & being in less pain. I feel very blessed to have only ever really been on Dmards & Nsaids and to have found the right combo for me easily with very few side effects. I feel so very badly for those of you who struggle so hard to find a med that will work & won’t give you awful side effects. I have a good friend in a similar situation, also in Australia who has come to the end of the biolgics line because of the rules. Its’ hard to know how much you’re suffering and to be powerless to help.
    I have to say that like you and Marti I’m a yoga fan. I try and do 3-5 sessions a week at home & it does help to keep things that little bit more flexible & helps you to cope with the pain by being in touch with mind and body. Of course when I wake in the morning it’s the last thing I feel like doing but I push myself to do it as I feel it’s something special that I can do to try and protect my joints and strengthen my weakened muscles.
    I hope that after this prednisone break that some other ideas will come to light, we have to keep on hoping & keep on trying however hard the struggle gets. Knowing we’re so not alone really helps.
    Gilly xxx

    • I agree Gillian, knowing you’re not alone makes a big difference. I don’t have to look far to find people who are suffering far worse than I am. And at least a prednisone break is an option for a while. What happens to your friend now? Does she just stick with medications that aren’t doing the job? I can imagine how difficult it must be to not be able to try treatments, when you know they exist. Its time the rules were changed!

  6. What a wonderfully refreshing article. I feel like we could be arthritic-spondalytic (made that up) twins. All was good until I was 13 then my body decided inflaming at every chance it could get was a good idea. Sneeze too hard? Oh that’s weird, I have a balloon of water on my knee. Laugh at a joke? Hmm let me just torch the cartilage in your left hip today. I’ve had my knee drained probably 10 times, cortisone, rooster comb injections, you name it. Played sports all my life until it all became so unbearable. No doctor knew what was wrong. Surgeries told me I had synovitis but no direct correlation to a cause. A few genetic markers that every rheumy I went to seemed to turn a blind eye toward. By the time I was 22, I had a full hip replacement. Bone on bone. Doc told me my knee was a near second in needing to be replaced. Can we say depression?

    Finally, I found a rheumy who I love. Turns out I have a hybrid form of sypdilitis and some rheomatoid thrown in. He put me on Enbrel and it was truly a miracle drug. I could actually walk again, dance, exercise, wear a freaking pair of high heels. Today it seems my inflammation has come back hard in my hip despite the Enbrel. Even took Celebrex on top of it — no dice. I ALSO started taking adderall for work around the time the pain started to increase and I hate to admit especially since I can read for hours at work AND stay skinny on it. Say what? Anyway yeah, I’ve now changed my diet to a paleo-anti inflammatory. As of tomorrow, I’m sadly putting the adderall down too. Praying I can feed my body back to health.

    Thanks for letting me vent here. It’s awkward for me normally being 28 and feeling I have the body of a 90 year old at times.

    • Wow, K, all of that, including seeing synovitis, and no one put it all together for that long? Crazy stuff. I’m so glad you have a good rheumy whom you love now. And Enbrel is your miracle!!! Breaththru flares, not withstanding. I hope today’s pain is a rare, isolated incident, and it goes back to wherever it came from! Good luck with the diet, I hope that gives you more improvement. I haven’t heard much about Adderall before, seems a few people use it. Why are you stopping it, if you don’t mind my asking? Sounds like a wonder drug, helping with fatigue AND keeping you slim! Usually drugs make me pork out! (I don’t spend much time worrying about that anymore tho). I hope you manage well without it, the diet may just do the trick. I hear you on the 90 year old thing, and really feel for you. I didn’t get really sick until I was 36, and I’m 46 now. A plus of spending most of my time alone is that I have forgotten what normal 40 somethings are capable of doing. So I stay in my happy little denial space and tell myself I’m doing Ok…lol. Take are of yourself, and good luck with the diet! let me know if it works for you!

  7. It is just so comforting to find someone who understands what pain can be. I am almost 65, and my AS was triggered at age 14 when I broke my tailbone. It took over 40 years to get a diagnoses. It happened when I experienced Iritis for the umteenth time, and a skilled ophthalmologist said to me, “Has anyone ever advised you to be tested for AS?” I had of course been to the doctor over the years, I was after all a nurse, and doctors I worked with would notice that I limped with my right hip some days. That was years before testing for the genetic marker was developed, or even known of. I remember in nursing school studying AS and thinking… I’ve got that… But as I studied I thought maybe this is it, or that is it… And in all my 27 years as a nurse, I never once read in a patient history of anyone with the diagnosis of AS… It is just so often missed. I had the same GP for 37 years, and almost every symptom AS has, ulcerative colitis, unbearable hip pain, rashes, iritis, etc… and never was it suggested that I might have AS. Of course I saw rheumatologist during that time… worthless waste of time and money… I was told I had “rheumatisim” at age 27, and that evaluation was so expensive at the time. The fatigue gets me so bad… and now I live in Germany as my husband works for the State Department. I had been taking Adderall for 13 years, with such relief of my profound fatigue, I could enjoy my life so much more readily… and I started taking it for ADD, and was amazed at how it helped the fatigue that was just a part of my life. The only way I can get Adderall in Germany is through the American Consulate… and through the government psychiatrist. The moment I walked into his office he told me he was not going to prescribe it for me. I have fought the good fight trying to get that taken care of… it has not worked…

    • Hi Debra, that is so unfair! I’m sorry that the doctor through the consulate is so short sighted! Why in the world woudldn’t he wan to help you? I don’t know much about Adderall, but it is a very common prescription. And if it helps you so much, its cruel to not prescribe it I believe. Did he have a reason why, or is he above being questioned??? I’m so sorry. And I can’t believe you worked in a medical environment all of those years, and no one put together the AS diagnosis. With all those co-morbidities, it’s a slam dunk in hindsight. Are you taking any DMARDs now? Have a decent rheumatologist? You have certainly had a very long, hard road to diagnosis. You deserver proper treatment, pain relief and adderall, as it helps you so much. I wish there was something I could do for you.

  8. Great article.I had back pain since I was a kid.At 28 I was diagnosed with celiac disease, hashimotos,plantar fasciitis and had severe hip,shoulder and knee pain, on top of the excruciating back pain.This year I was diagnosed with carpal tunnel syndrome.I am unable to breathe properly for over a year,had my ribs and hip dislocated more than once and my big toes started to hurt.I know I have anylosing spondylitis,as I have every single symptoms, even the jaw hurts.Unfortunately my doc blames everything on my adrenal insufficiency. I had my back,knee and hip pain way before my hashimotos. The sad thing is that my husband think this just something minor,not like his back pain from sitting literally all day.I have 3 kids at home all day,every day.Hopefully I will be able to find a doctor soon.


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