Was diagnosed with psa dec 2012 by rhumy, have gone to pain clinic twice and the dr seems to be trying to diagnose me n keeps sending me for mri, they r doing nothing for my pain, I’m on lyrica and tridural and neither have any effect, so she gives me sleeping pills, I’m not sleeping because my back is paining so bad! Can’t get into rhumy until Feb n I can’t figure what good pain clinic is, came home yesterday went to bed n cried, I just don’t know what to do?? I’m worried that without proper meds psa will start destroying my joints:(
I am so sorry to hear that you are having such trouble with your pain management doc. Remember the good old days when doctors could provide what their patients needed without having to farm them off to another "specialist?" I miss those days...
If your PM doc isn't hearing you or treating you effectively, perhaps you can switch to another? I don't know how prevalent they are where you live. I only had experience with one - and he was a real winner (NOT). Your Rheumy might have another suggestion - can you call them and see if they have any cancellations or could you perhaps leave a message for him/her? My Rheumy's office will let me talk to a nurse and she can usually provide answers for my questions (or she will catch the doc between patients and then call me back).
Please keep in mind that the pain doc isn't going to be treating the PsA. He/She is merely there to help you figure out ways to cope with and diminish the pain. The damaging inflammation has to be treated by your Rheumy. My best suggestion is to call your Rheumy every few days to see if they have cancellations to get you in sooner than Feb. Best of luck to you, and know that we are here to listen and send care and compassion your way.
I have no idea what good a pain clinic is. especially it appears from what you have said, the one you are going to.
Tramadol and Lyrica are not PsA drugs. In fact they are rarley used together because of the high risk of interaction. I can't imagine the combination would do anything but make you crazy and impair both your judgement and cognition. How did you end up in pain management?
The MRIs are to find a source of spinal Neuralgia, I would assume. That is something that rarley happens with PsA and only in the most advanced cases and only when there is permanent damage.
I don't mean to be blunt, but you have every REASON to be concerned. if your Rheumy had ANYTHING to do with this find another one.
So sorry you’re in such pain and feeling so bad, Kara. Sounds like you REALLY need a follow-up with your rheumatologist. Call, write, send carrier pigeons, but try to get in to the rheumatologist sooner rather than later. Here’s hoping your pain eases soon.
Thank u for the reply, im calling rhumy tmrw as his secretary used to work with my hubby n maybe she can help, im not going back to the pm dr, shes not helping n ive felt even worse after seeing her, its as if she doesnt think i have psa?? Thank u again i feel better just being able to let out my feelings to ppl who actually understand
When I was first diagnosed I had to wait months before I could see the Rheumatologist, then right after, temporarily lost my health insurance. I know it is so horrible to suffer and wait. I would do as the other poster suggested and call every other day or 2 to check on cancellations or openings for that doctor. I would take Aleve to gain just some relief, although it usually takes a few days to build in your system. Even if the doctor can't see you the nurse may have a suggestion on something for pain. Cant hurt to ask.
I pray that you find relief sooner than later !
Thank u Jen, ill update tmrw…fingers crossed
This is how I got in earlier..
I called the nurse and explained to her that my appointment was weeks away and my hands were hurting so bad that if I do not get to see the doctor ASAP I was going to cut them off. She told me not to do that and come in after lunch. It was drastic but I got in.
Too funny rebel mom, i needed that laugh, thk u
Confused, p-o’d, depressed and SCARED. Scared is awful, and I’m sorry you’re suffering all of that. I remember how scared I was this time last year – terrified that PsA was trashing my joints while my rheumatologist did experiments with this drug and that. You say you were diagnosed with PsA by a rheumatologist last December, and s/he hasn’t given you any treatment for that, only pain meds? Or am I missing something here?
I agree with the others: you need to see that rheumatologist asap and see about getting treatment, not pain meds. I think that if you need pain meds, you aren’t getting the right treatment for your PsA. I know there’s a shortage of rheumatologists in Canada, but you need help. Present yourself at the secretary’s desk if you need to. Call every day to ask if there’s a cancellation appointment. Go see your GP and ask whether they could request an earlier appointment. I know it’s hard to do when you are already feeling so low, but you need to do this. And you can do it. Let us know how it goes.
Tntlamb, my family physician got me into pain clinic cause rhumys booked until my appt in Feb, rhumy gave me the meds n if theyre not making me crazy, the pain surely is, ive tried every otc pill n herbal? stuff, patches,massagers etc n 0 relief …thank goodness for this group, thks for the reply
Seenie, thank u for the encouragement, it means so much, and yes the rhumy gave me the meds and 2 injections in each side of my lower back but i cant remember what he injected, ill call tmrw n let ya know, thank u again
Your primary should at least be able to give you a prescription NSAID and some prednisone to help tamp down on the inflammation until you see a rheumy. Even 20 years ago I had to wait months to see a rheumy, even in a college town. Get on the cancellation list and in the meantime see your primary for the things I mentioned above.
Confused? You must get this book, "Psoriatic Arthritis the Facts". Its a great guide to the disease, symptoms, and proper treatments. Learn and then learn some more. As hokey as it sounds, with knowledge, comes power. The more you know, the better you will be able to advocate for your needs.
Pissed Off? Understandable. You are not being treated for anything, really. The long waits for specialists are obnoxious.Re-direct that energy into advocating for yourself. No one else is going to do it for you, so you must. Be a pest, call until they get you in.
Depressed? Do all of the above, AND make a trip to the GP. There are things that they can do to band-aid this situation until you get your Rheum appointment. As have already been mentioned: Prednisone, an Rx NSAID, lidoderm patches, and an anti-depressant are all things your GP can and should manage. Geeze, those aren't even unreasonable requests to the PM people.
I get it. We all do. If you want help, you have to know what you want and start asking for it. That's why I advocate the reading. WE must be informed and empowered. You are being treated like a hysterical woman. Make them stop and pay attention. Make them HEAR you.
my psa. The pain meds would not touch the pain. Please ask a rheumatologist to help u. U may need a biologic. My experience really sucks. I was sent to a pain clinic and guess what ??? They turned me away. --saying. U have too many issues for us to monitor so they sent me away with nothing. The sad thing is. I had Psoriatric Arthritis for several years before being diagnosed!!! So N I have several joints throughout my body that have been destroyed. I will never have them back to normal. I had a knee replacement twice on my right knee and just had a joint replaced on my left big toe,just last week. My spine is deteriorating along with my other knee. Please bug them each and every day!!!!!
Anyway Kara, I think I understand whats going on. Although I don't fully understand how things work in Canada, I do believe you can get copies of your charts and notes. This is important VERY important. You need to find out why they put you on lyrica. Diabetics get it because of diabetic neuralgia. Everybody else who gets it (unless its prescribed) almost gets it because of spinal damage, having Fibromyalgia, or being "nuts" The pain center wanted to confirm the spinal damage. They almost never work with diabetics because the meds they use, mask serious conditions. Pain management docs usually don't work with Fibro (though some do) and never with hysterical pain. For people woth Psa a fibro Dx is the kiss of death.
Spinal studies are not all that dependable with nerve issues and PsA (inflammation may not always show up or hides) even done with STIR sequences and contrast. So what I suspect was happening is the doc heard severe radiating pain from the spine which describes neuralgia and rather than a bunch of expensive tests that are inconclusive decided to try a neuralgia drug. if you got better he had a a Dx for the pain, if you didn't he try the next thing. As far as the pain mangement folks without a clear known cause of pain, in this day and age they won't treat it.
You said you were pissed off? Well in the PsA patient world there is another phrase (actually i stole it from my army days) "tis better to pissed of then pissed on" Time means nothing to Rheumys. He needs to hear clearly that the Lyrica did not work. They guy may blissfully think you are doing fine..... If there is a hint of either hysterical pain or Fibromyalgia on your charts, get it off there NOW.
When you speak to your doc (this goes for any of us) DO NOT say "my wrist hurts worse than it ever has" (even if it does) he hears that 50 time a day and it means NOTHING to him. (sorry it doesn't) What would mean something to him is "My wrist hurts. A week ago a could cut my meat, now I can't" always relate the pain to function. What will really get his attention is the whole morning stiffnesss thing "My morning stiffness used to last 20 minutes now it take an hour"
This is a tough thing to explain but there is no direct relationship between disease and pain. Your rheumys job is to treat the disease and that is measured in FUNCTION and inflammation. If he fixes those, the pain should improve. (but not always) pain may be the biggest issue to you but it isn't to him. keep track of your FUNCTION (pain notes don't necessarily hurt) it helps him (and you) the most. If you have ever passed a kidney stone, you will understand what I mean. I don't believe there is any worse pain (and trust me I have plenty to compare to) for something so minor (well until the big one got stuck and they did emergency surgery in the middle of the night.
Make it clear you can't wait until Feb to tell him meds that were prescribed months ago ARE NOT WORKING
Once again, Lamb...you nailed it right on the head. Have I mentioned how glad I am that you're back? I am. Really!!!
I understand. I went through the same worries and still do at times. It has taken me a while to find something that now appears to be working. This past spring and summer were the worst of my life. Constant pain and swelling. It was never ending and I didn't think I'd ever feel normal again or function again. But....I am much better now. I hounded my Rheumy a lot and if I couldn't see him, I called the office to get answers.
I think you need to see a rheumy and much sooner than February. Can you see about finding another doc ? Or maybe call the doc's office and ask them what they would suggest you do until then. What are you taking for pain ?
I really don't think a pain clinic will help much. The PsA needs to be under control.
Called rhumy all day …no answer.just a recording, so i left about 10 msgs n calling back first thing in the am
Keep at it, Kara. I like CA-Lynn’s idea of calling every morning to ask whether there are any cancellations. Stayin their line of sight without ticking them off. Good luck, let us know how it goes!