Hi everyone. I’m Karen and I’m 36years old. Here’s a little history that lead me to see a Rheumatologist. I’ve had psoriasis pretty much my whole life. I remember having scalp lesions in 3rd grade, so it goes way back. I would have it only on my scalp and occasionally in my ears. It would flare up, and get better…over and over. I tried every type of shampoo treatment I could possibly find. Nothing helped or got rid of it. It wasn’t a very severe case of psoriasis either. I would get a few lesions on my head that would last a few months, only to disappear and reappear somewhere else.
3 years ago, I started to have sever SI joint pain that would radiate around my left hip and have a burning sensation. It had gotten so painful at one point I actually passed out from the pain. I went to the Dr, I had an MRI, went to a chiropractor, saw a physical therapist and was put on Gabapentin. I finally got some relief after being put on Gabapentin.
Fast forward to this year, I started getting some intense pain in other joints (shoulder, neck, stiff finger joints etc etc). My SI joint pain almost has disappeared…for now. Although it is still tender at times. I get really stiff after sitting down for only a few minutes, but other than that my SI is pretty good right now.
Besides random joint pain, the fatigue is the WORST!
My dr, did blood work and my CRP and ESR was very high. My WBC was elevated too. With these results and my history of psorasis she sent me to a Rheumatologist.
The thing I find odd is that my skin lesions have disappeared. I haven’t had a lesion on my scalp in probably 2 years.
My Rheumatologist started me on sulfasalizine and I go back to him in August.
Hi there, Karen! Pleased to “meet” you, even though it’s a shame that you had a reason to join our club. As you work your way through the site – the Newbies’ Guide is a great place to start – and read other peoples’ stories and discussions you will certainly recognize your symptoms! You mentioned fatigue. So many of us can relate to that! Here’s an article from our Newbies’ Guide:
Do join into our conversations. Sharing experiences and supporting others is one of the things that helps me feel just a bit better. A lot of us feel that way.
Hi MissMuffin--Karen--and welcome! Sorry you had to find this site, but I'm also happy for you that you found it. Not only can you get a ton of information here, but support and encouragement from people who know exactly what you're going through.
I can tell you I have had all your same symptoms, but to different degrees and/or times in my life and order of onset of those various symptoms. I've had additional symptoms, but I'm a lot older than you (61) and didn't get treatment for my PsA right away when it was diagnosed.
My advice to you is to continue following up with your Rheumy. I avoided doctor appointments because every time I went in they would try to talk me into taking some kind of med. I was hoping for some miracle cure without meds! I finally ended up on Enbrel last year and it's been the miracle cure I had wished for. Yes, I have to take a "med" in the form of an injection, but it has relieved my psoriasis and PsA at least 85%-and that's fine with me! The stiff back--I had that, too. Shortly after starting Enbrel that stiff back was gone! But, unfortunately some damaged had already occurred and my back "went out" due to a disc protrusion. Oh, it got better, but not for long--then my SI joint started giving me that horrible pain you described. But, with p.t., rest, heat, exercise, massage, it got better.
I just wanted you to know you can feel better and not to give up hope!
I've met several people with PsA who have PsA flares and their psoriasis goes away or is much less. When I got my diagnosis, I was in the middle of a HUGE flare and just about all of my psoriasis was gone, even spots that had been driving me crazy for years. So it does happen. :)
Welcome Karen! Yes, much of your experience is similar for me it is most pronounced in my back but has moved around recently settling heavy in my feet toe joints specifically. I am starting my 3 rd week on Gabapentin (looked it up and found its same as neurotin). Curious if you remember what dosage mg you found releif at if you remember? I should have expected that it like almost everything prescribed would take time to work but the doctor didn’t explain it well but the pharmacist did. I know everyone is different just curious because no help yet but praying for good results soon.
I am also on Enbrel and it was slow results as well but I stuck with it and am finally seeing real results! The fatigue is the worst but honestly have had an 80 percent improvement in that with enbrel. Also the hand swelling has improved that much too. There are so many great people on this site! All of the ones you had respond are amazing people so hopefully you will continue to reach out and get to know us better.
I can’t remember how long it took for me to feel relief on gabapentin. Maybe a couple months? I have heard that that med either works or it doesn’t for you. I was lucky it worked for me. I was taking 600mg a day.
Just went up to 300 mg and he has 2 more scripts ordered to bump up to. Was expecting awhile but that gives me some idea, thanks! How is sulfa working for you? I tried to take it but only made it 2 days because I am allergic. I completely relate to stiffening up quickly, if I sit its all over. Once I start icing (which is a nightly ritual) I feel so much better! Glad the Gabapentin worked so well for you and hope you’re able to find the PSA meds that will help with your current symptoms and flates.
Last summer I started having shoulder pain usually when I woke up in the morning and I just thought I was sleeping funny. Then in August I woke up one day and couldn’t lift my right arm due to the pain. Throughout the day and the next couple days it loosened up and the pain reduced so I thought nothing of it.
Over the next few weeks I started having pain in either or both shoulders, Knees, and elbows. In November I went to my PCP because the pain was happening at least five times a week and in 3 to 5 joints and affecting my ability to do things. We did bloodwork, which came back normal, and I was put on the anti-inflammatory Mobic. That seemed to provide relief for a few days, but then I was back to the doctor with even more severe pain in even more joints and we tried prednisone.
I also saw an orthopedic specialist he said I had a systemic inflammation problem and all my joints were inflamed. At that point I got on the waitlist to see a rheumatologist it was an 8 month wait for an appointment.
During that wait my pain became more severe to the point that by the end of the workweek I would shuffle around like an 80-year-old woman. I also had some okay times when I felt like I could return to normal activity only to be blindsided by severe pain in some new joint the next week. I tried so many different topical creams and home remedies, more prednisone and painkillers, and an extremely strict diet with very inconsistent results.
Now that I have the PSA diagnosis I’ve been on sulfasalazine for about six weeks. My rheumatologist wanted to go straight to a biologic but I am scared of the lymphoma risk due to a significant family history of lymphoma. Over the last week my pain symptoms have reduced I’m hoping it’s the medication and not just a lull in symptoms.
Besides getting ahead of the pain and finding a management plan my biggest challenge right now is the mental side of having a chronic condition and not knowing what my future holds. I seriously doubt my ability to do my job. I struggle because in all honesty I don’t really have any friends to talk to. My husband tries to be supportive but he has his own things to deal with that make it hard. I’ve come to the point where I feel very stuck and am unable to make decisions.
Sorry this is so incredibly long. I’ve been stalking this page for weeks and never really put my journey down in writing. Your share inspired me to do so. Thank you.
Hello Everyone.. Wow glad i found this place today... Ive been dealing with all the same as you all... Gabapentin all day long
Vicodin, percocet ,Stelara every three months along with others But the Joint pain people around me dont understand my pain I walk like im a old person. The pain in my feet cannot go barefoot my feeet hurt so bad . And the wierd part is the joint paint somewhere different on ocassion my wrists ,shoulders, hip etc..Working for the last five years to get SS. have a app with attorny tomarow to get ready for Second Remanded Hearing .. Since appeals council denied the ALJ decisionj of course that only took 18 months to find out. But anyways Next hearing in Aug.. yea Dealing with the pain... And the pain of SS thanks for letting me vent.!! Wish me luck.....