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New here and question WWYD: I haven’t been to a Rheumatologist in 8 years!

  • By Marieblossom

    Hi I am new here!
    I have a question because I haven’t been to a rheumatologist in so, so long. I would love to hear what you think.

    Firstly, I was diagnosed with PsA in my mid-thirties about 11 years ago. It was a horrible, ghastly time in my life. I had three young kids and my life was in turmoil. Then the pain. I could barely walk. I used a cane and my life was so limited. I was so exhausted and so many strange symptoms. I took NSAIDs and pulses of cortisones. My life revolved around my pain, my immobility and my medications. I felt like everything was falling apart. I became depressed and convinced I was suffering from something else. So many issues I see mentioned on this site, nobody was talking about (like tendon inflammation and dizziness, hearing loss etc) I felt like I had the wrong diagnosis or maybe I was faking it all and started a downward spiral of doctor shopping and sadly, also psychosomatic issues.

    Eventually, with the loving support of my partner, I was able to distance myself from my illness obsession and rumination. Of course, my symptoms didn’t disappear, because truly, I do have PsA and it does affect my life. But with self-training and acceptance, I was able to refocus and start being as active as possible. I think in the past years I have been able to find a happy balance of respect of my limitations and healthy adventurousness. I try to not hold myself back from doing things I really want to do. Sometimes it causes a flare, sometimes I over-do it, sometimes I just naturally have a flare but I think I have become pretty good juggling it and being responsible.

    Which leads me to my question. Should I indeed still be seeing a Rheumy? I haven’t been in years. I have always been of the “leave well enough alone” camp, but I have been in a bit of a nasty flare since before Christmas and during this time I have come to realise I am seeing some (albeit very small) changes in my hands. My thumb is starting to bend at a weird angle (it’s very minimal but still a little scary to think about) Noticing this and a few other things has opened me up to thinking maybe I have been letting the disease progress so much and I may be irrevocably damaging my joints. My biggest inflammation areas are my hips and lower back, but my daily stuff is really hands and wrists feet kinda stuff as well as the obligatory always stiff in my hips stuff. What kind of damage are these joints suffering?

    My dermatologist has been great. He wants me to see a rheumy because I had chronic hives and some other unsavoury stuff (think random swelling body parts and joint pain) but I feel like it was a fluke. I haven’t had it again and it’s been two years. He understands I am afraid to “go back” to that place I was years ago and isn’t pushing.

    I just last year I started with MSM (with which I have really good results) but other than that I don’t take any other tablets. (I do eat a vegetarian diet and I have been considering phasing out to a vegan diet / anti-inflammatory diet. Still researching though) During this current flare, I was often at the point of feeling like I wanted to have some meds, but I couldn’t push through my very strong desire to avoid the rheumatologist. I just feel like I might risk falling back into the rumination of the past and I really don’t want to focus so much on my illness.

    But should I!?!? Advice anyone?

    Also, sorry for the novel, thanks to anyone who stuck it out and read through to the end, hahaha 🙂

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  • By Jaime Lyn Moy

    Hello! Glad to hear you’ve been doing well during the past 8 years. Sad to hear this good luck might be ending.

    I’m more in the “be proactive” camp. Unfortunately, once joint damage is done, it can’t be fixed. And with psoriasis (and PsA) comes a bunch of co-morbidities (scary name for other disease that can accompany psoriatic disease) like heart disease, eye inflammation, liver disease, diabetes… Like psoriatic disease isn’t enough!

    Eight years is a long time to go without seeing a specialist. If I were in your shoes, I’d schedule that rheumy appointment. So much has changed in eight years as to course of treatment and research. You might find yourself pleasantly surprised at the options available, but it’s important to have this discussion with a professional who can follow your care.

    You’ll probably have peace of mind finding out what’s up and how to deal with it.

    Best of luck and keep us posted! Sending positive vibes your way.

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    • By Marieblossom

      thank you so much for taking the time to answer.
      “So much has changed in eight years as to course of treatment and research. You might find yourself pleasantly surprised at the options available”
      THIS!!!!!
      I am already noticing just here on this website that things have really changed. I didn’t feel like a lot of my symptoms matched the PsA diagnosis back then, but now, hearing what everyone is talking about: it’s like everyone is talking exactly about me. It is very comforting (and a little scary)
      Your words are very motivating, so thanks!!!

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    • By Jaime Lyn Moy

      This community is fantastic! I love being a part of it! I’m glad you’re feeling a little more vindicated with your symptoms, I’m just sad you have them at all.

      Each PsA patient is different, and treatment varies. Continue to reach out in this community, and we’ll do our best to help. Just don’t forget that your doctor needs to play a big part in your care, too.

      Good luck, and we’re cheering for better days for you! – Jaime

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    • By Marieblossom

      Thank you, you have been so lovely (and really, all the comments I read on this site are always so kind and heartfelt)
      Right now I am taking a little moment to be sad. Think I am really a bit overwhelmed and upset to get back onto the rheumatology carousel. I only have dark memories of that time of my life and it’s harder than I thought to go back to the idea of exploring my symptoms again.
      I’ll dust myself off tomorrow but for today I am a little fragile.
      But again, thanks 🙂

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    • By Jaime Lyn Moy

      Awww! We all have days like this. PsA can be completely overwhelming. Try to focus on getting one task done at a time. That can make it a bit more bearable to navigate this disease. Please know that you are not alone. We might not be there physically with you, but we are with you in spirit. Emotions run high, that’s for sure. We can definitely relate.

      When you are ready to make the call and get a rheumy appointment, you can reach out to the National Psoriasis Foundation’s Patient Navigation Center. It is a free, personal service that can provide information on doctors in your area. The staff helped me find a new doctor in my area when I needed it. They are great! https://www.psoriasis.org/navigationcenter

      Of course, there are lots of articles here about first-hand experiences, so be sure to do a search for those, or just reach out on the forum for more advice! We love to help!

      Psoriasis / psoriatic arthritis patients may experience depression. While you are most likely just having a difficult time taking it all in – as you mentioned – please be self-aware and seek professional help if this turns into something more daunting. There is no shame in that. It’s hard to get your physical health under control if you’re having trouble in the mental health department.

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  • By kwtawalker

    Yes, it can consume your life, and we have to be careful about that, but wearing blinders will not make this disease go away. MSM will help reduce swelling, but it won’t stop joint damage. I, too, refused to see rheumatologist. I used alternative interventions like chiropractic, acupuncture and massage. I hate medications. I did this throughout my 30s and 1/2 my 40s. I am now 49, and started treatment 4 years ago. The damage is done, and there is no going back. The joints in the feet, palms of my hands, my hips, ankles, and wrists will not ever be the same. Two years ago, my neck and right shoulder became involved; and unfortunately, I live in excruciating pain every day. I am about to have an MRI, but I was told I probably set myself up due to chiropractic adjustments. There are many who use cannabis to reduce pain, and I have been told this does wonders, but it does not stop the damage. I had to zip through most possible treatments and am now on Biologics. Unfortunately, there might have been other treatments which may have slowed the progression down a long time ago, and I may not have ever had to be on these meds. I encourage you to get treatment now. I also encourage you to educate yourself as much as possible. While you don’t want to be consumed, knowledge is power, and you cannot bury your head in the sand with this disease as it is not going away.

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    • By Marieblossom

      I have to say, my heart sank a little when I read your response. I think I have a more “emotional” reason to not wanting to visit the Rheumatologist than a rational one. I think I feel like I am kinda doing okay, why push my luck? But maybe I am also afraid to hear any bad news….
      Ant any rate, can you tell me how you notice damage?? Is it something only a doctor can ascertain, or do you notice it on your body? I only notice my fingers have changed ever so slightly on one hand. I guess it would be good to have ex rays done again to compare and assess. I am so not looking forward to all the doctors visits…
      I am so sorry you hare going through this horribly painful time. But thank you for sharing and it is encouraging me to address my issues. Wishing you the best!

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  • By kwtawalker

    Everyone is different. Some people are covered in psoriasis while others have a patch or two. I started noticing that the joint in my big toe and right thumb joint were not going down. My SI Joint Dysfunction was becoming more frequent, and adjustments were not working the first time, and becoming more frequent. My plantar fasciitis became unbearable at times. This is not everyone. If nothing else, do yourself a favor and go have comparison xrays. It could be you are one of the lucky ones and a mild NSAID will be all you ever need. I know 18-yr-olds who are pretty crippled up, and others are on a mild NSAID at 60. For those of us who have an aggressive form, we will tell you to not wait until too much damage is done, but that does not mean that is you. Unfortunately, unlike RA, there isn’t a blood tests that gives a definitive, so many wonder if they were misdiagnosed. I have absolutely no family history of psoriasis or PsA. There was absolutely no doubt as to my psoriasis. I can almost tick off related conditions now that I know so much more as to PsA: SI Joint Dysfunction, Raynaud’s Syndrome, Plantar Fasciitis, thyroid issues, uveitis. Not everyone will experience the same thing, just like not everyone has the same triggers. There are many different forms of psoriasis and PsA. Having comparisons xrays might actually give you peace of mind. I cannot stress enough though that once damage occurs to the joint, you cannot take it back.

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    • By Marieblossom

      Thank you so much for your perspective. I am still pretty bummed out thinking about going to a Rheumatologist again. I won’t lie, it’s throwing me a curve ball.
      But certainly, trying to view it from the perspective of: see where you are at, damage wise, and assess from there is not a bad idea. I think that’s just what I have to do. I am just going to take it from there I think.
      Thanks for your encouragement.

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  • By Diane T

    Hello Marieblossom,

    I felt like I was reading my life story. I have had PsA for over 30 years and severe psoriasis for 55 years. You have already got some great advice here, but the one thing I want to echo is to see a rheumatologist as soon as you can. I waited until my later years to get treated and have many health issues at this time. You want to catch joint damage early. I have so many co-morbidities because of my disease, that I have lost count. I take more medications than my father who is 84 years old. Do yourself a favor and go see a doctor soon. We are all different and have different outcomes with this disease. There are so many different treatments that can be done these days. Good luck on this journey and let us know how you are doing.

    Thank you,

    Diane

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    • By Marieblossom

      Hi Diane,
      thank you so much for your reply. I just wanted to let you (and well, everyone who took the time to reply to my post) that I called the Rheumatologist. It was a hard decision for me but basically- yeah, it’s time.
      They can’t see me for a year (holy moly!!!!!) but I have made an appointment with my general care doctor because he has mentioned he would do what he could to get me in earlier if I ever needed it. I do feel a bit sheepish (I don’t really feel like an emergency or anything) but my husband is pretty adamant that I take the dr up on his offer. (and he is usually right about this kind of stuff)
      Since I am feeling a bit crappy of late (I have a stupid inflamed joint, my thumb at the base, which just won’t calm down since the middle of December and I am feeling a bit run down) I guess now is as good a time as ever to call in the offer.
      I do hope you are doing as well as you can and I am truly sorry to hear about all of your various health issues.

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    • By Jaime Lyn Moy

      We’re all here for you! So glad you took that scary first step. Good luck and let us know how the appointment goes.

      Jaime

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    • By Marieblossom

      Aw thanks, it’s so comforting to be able to talk to folks about this.
      I went to my primary care doctor today. I was upfront about my situation and my fears.
      He agreed: it’s time for a specialist visit. He said he couldn’t guarantee he could get me in super fast (he thinks about 3-6 month wait) but if he can’t manage that I will have to bite the bullet and do a full clinic assessment for 3 days. Those appointments generally are available on short notice. I DO NOT want to do this, so we agree that 6 months was the waiting limit.
      He also pretty much agree with you guys: There are so many new options to explore. I shouldn’t stick my head in the sand and risk (possibly more) joint damage.
      He also has sent me for some X-rays of my hands to see if things are dire. (my current inflammation is pretty much at my limit and has been getting worse instead of better through the weeks, after having improved in late December. It’s been worrying) I now have a thumb brace, which, I won’t lie: it’s amazing. I am kinda bummed it’s only for night because it is relieving so much pain and really protecting me from every little bump (I have been really really sore)
      I have also been written off sick for a week because I’m feeling like I am so run down, tired and more aches and pains keep coming. This flare has just been generally kinda sucky, but I haven’t really taken time to take care of myself. Work has been so crazy and pushing though hasn’t been working.
      I will know more on Tuesday, wednesday after the X-rays and another talk with my doctor.
      To sum it up: thanks everyone for encouraging me to go. I am actually feeling like this really needed to happen and was long overdue.

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    • By Rebecca Keymaster

      I’m so glad it was a productive visit!!!!!!! Let us know how you make out after you talk with your doctor Tues/Wed!

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