Thank you! All of you… especially @tntlamb… I’m sorry for getting angry thank you for being an amazing old fart I just get so incredibly angry… and I know I’m not angry at you in that moment too… but I can’t stop it… I have a nice round bruise on my arm from biting it… I don’t even remember doing it… just that it hurt right after… It’s been a very long time since I couldn’t catch myself… That’s scary…
I went to my primary care doctor today for my stumach ache which has been getting worse from Arava… She gave me fiber sachets… She hurt me more by accidentally checking the painful spots (hip and sternum) then the reumathologist, but then again she was checking joints and not tendons…
Now that I think of it why would the tip of my hip bone on the front hurt that much? Are there tendons on the tip? Must be…
Anyway after I came home from the doctor, 40 minute cycling both ways with bad wind… (wouldn’t it be nice if I hated my primary care doctor… There’s one 5 minutes from my home…) I had 30 minutes to sit down and then had to go to the dietrician (SP?)… who was nice and told me everything I already knew but also ways to actually be able to do it… she’s going to send me a plan I can follow with super easy recipes… bf already went out and bought all the things they recommended for the next couple days… I really hope I’ll feel better fast so I’ll be motivated to keep it up…
Anyway thank you all of you! I wish I could come over and give you all a big hug!
I really need to get some sleep now… I stayed home sick today but have to work tomorrow… omg I just realised this is my short reply… I didn’t even re read everything to see what I forgot… lol
She didn’t call Tuesday… She didn’t call Wednesday… I called them this morning to ask… they said the call appointment was for next Tuesday… i started crying and the one on the phone got defensive because I’m not allowed to be upset if he didn’t cause it… I tried explaining to him it wasn’t his fault but he kept repeating it wasn’t his fault… So i hung up… I was really angry so i send an email to them and then went back to work… An hour later they called 5 times (the guy on the phone, whoever got my email and the reumathologist herself) i was so worried they would be mad at me… She wasn’t though… i went to see her at 2 and left 40!! Minutes later! She was relaxed and listened to me…
Anyway she’s referring me to a PsA specialist at Reade (i forgot his name) and to their rehabilitation center… not sure what that means but it’s one place where they will look at everything instead of all separate doctors and therapists…
And she gave me a prescription for arcoxia 120 or 150? Mgs… i hope that will work better then the diclofenac…
Now all i need is something to keep my head cool… I should call the psych office to see about my appointment… but I’m so afraid they’ll say I’m not bad enough and have to wait even longer…
Well done. You were upset, you expressed that, they reacted and took appropriate action. And now you are one step further, on your way to a specialized specialist. That is wonderful progress, and you made it happen.
Now take on the psych office. Call. Tell them you are in a very bad place, and perhaps throw in that you may not sound it, but really you are. Can they please help you by getting you in to see the psych as soon as they can. Don’t take “next month” as an answer. Tell them you will take a cancellation appointment. Make sure they know that you need help. Because you do.
Sadly, it’s squeaky wheels that get the grease, and if Cynthia doesn’t make it clear that Cynthia is in a bad way, the gatekeepers (secretaries, etc.) aren’t going to respond in the way you need.
Learning to advocate for yourself, and developing the skills to seek out and get the help you need when you need it, are all essential to coping successfully with a chronic condition. You can learn that, and you can do it. I think you are well on your way to some success. That’s wonderful.
Hey Cynthia! I just wanted to ask if your doc ever tried a little prednisone? It can provide a lot of relief–in my case, a week of prednisone made me feel like I was walking on air!
I feel like I have to disagree with tntlamb in regards to nothing helping tendon pain. I’m pretty sure the chronic pain above my wrists and in my shoulders (just below my clavicles) was tendinitis–at least the rheumatologist mentioned tendinitis…it has been completely gone since I started Enbrel 2.5 years ago.
I don’t mean to doubt ANYTHING tntlamb says, because he knows more than any of us here about PsA and most other things, but I’m wondering if my wrist and shoulder problems weren’t tendinitis, what were they?
Also, that pain on the point of your hip–I’m not sure if that’s the top of the pelvic bone you’re talking about–I used to have pain there all the time before I was diagnosed with PsA–didn’t think about it until you mentioned that. I also had pain on the inside of my knees, which has been recurring lately. I remember reading a LONG time ago, these could be fibro pain points. I, however, think they’re another PsA annoyance!
I hope you’re doing better today!
And, tntlamb, that was a very nice heartfelt and informative response from you…I’m sure we all benefited from it!
Reade is a centre for reumatology and rehabilitation in Amsterdam
The point on my hip i meant is the part that sticks out in skinny people… the point of the elephant ear (or am i the only one that thinks the hip bones look like all elephant without trunk… ((omg i just thought of something men totally are elephants sorry…)) )
I wanted to ask for a week or 2 of Prednisone! I totally forgot…
I asked her about fibromyalgia and she said i cant have fibromyalgia because i have a real illness… (Well she said we only call something fibromyalgia if we can’t find a cause) so it’s impossible to have the 2 together…
Which seems wrong to me… fibromyalgia has a cause they just don’t know what it is yet… (or are close?) I can have PsA and IBD or PsA and a broken leg… I don’t care if i have it or not… it won’t change how i feel or what they do about it… but i care about people who do have fibromyalgia…
I definitely had a lot of the symptoms they call fibro and so interestingly, Enbrel made them go away! Yep, that elephant ear is the place haha! And men would be elephants except they don’t have the prominent “ears” like women – do they??? They just have the trunk.
Oh yeah, if I could safely take prednisone all the time, I would…before I went on Enbrel I had a week of prednisone and I BEGGED my doctors for more but they refused, telling me it wasn’t safe. That’s how they got me to go for the big guns–I was afraid of biologics–and I quickly got over my fear!
I’ve said this before but I still feel craving for Prednisone whenever i see someone mention it… i don’t even remember if it helped… only that i really want more… Which makes me question wether i should…
I was reading a reply you gave about a bad rheumy. I had to diagnose myself! I have suffered from neck and upper back pain for 12 years due to a car wreck and 4 neck operations. My last neck operation (refusion) was in 2015. I had been having terrible pain in my arms for several years prior to that. After the refusion, I still had terrible pain in my shoulders and arms and I developed pain in hips (triggered by the doc taking bone from my hip for my neck). Neither of these pains went away after a year.
I sat down one day and pulled up al the symptoms for RA, Lupus, MS, and PsA. I had more of the PsA symptoms than the others. I went to my neurosurgeon and told him I thought I PsA. I waited 2 months for a appointment with his rheumy. I got frustrated and called my PCP of 35 years and told him I was pretty sure I had PsA and told him to get me an appointment with the best PsA rheumy in the area. It took am month. I told the rhuemy I thought I had PsA. He checked some of the sysmptoms unique to PsA and said Yep, you have PsA. He tested me for the B27-HLA and I don’t have that, but he said that didn’t mean I didn’t have PsA.
He has been a good doc so far. Started me on Otezla, but last month he was not happy that it was not working that well. He doesn’t have a problem keeping me in pain pills, which I hate taking but sometimes have to. He wants me to consider Enbrel or Humira even thought I had prostate cancer two years ago (which I have discussed else where).
Oh wow, that is an amazing self-diagnosis story. I too self-diagnosed originally. After years and years of pain and fatigue, I finally had an x-ray that showed damage. The person who did the x-ray (a podiatrist) said it was some kind of inflammatory arthritis. I looked up inflammatory arthritides, and I seemed to have more on the PsA list than any of the others. That was strange, because I didn’t have psoriasis. Then I looked up psoriasis, and saw a picture of the nail issue that my GP had been calling “fungus” for about 15 years. She thought the picture I printed out was funny because it matched my finger to the point that it looked like I’d taken the picture myself. She laughed but I didn’t.
I just get so incredibly angry… and I know I’m not angry at you in that moment too… but I can’t stop it… I have a nice round bruise on my arm from biting it… I don’t even remember doing it… just that it hurt right after… It’s been a very long time since I couldn’t catch myself… That’s scary…
(or am i the only one that thinks the hip bones look like all elephant without trunk… ((omg i just thought of something 
men totally are elephants 
They just have the trunk. 