Hi everyone this is my first post. I have been battling PSA since January I have arthritis in every single joint, doctor said condition progressed faster than expected. Anyone have any "mental tips" to help pus through? I have rode couch the couch all weekend, canceled a party, and couldn't go congratulate a friend of over 20 years on her engagement.
I don't think people understand the pain associated with PSA. My husband and I have also been separated for six months and we are trying to work things out, how can I when ankles are so swollen I can't wear shoes, or fingers are now sausages and can't apply make up.
Hi Missy! You are officially in the gap. You didn’t mention what your current treatment is, but it can take time to get control over things. I was pretty scared and overwhelmed when I was diagnosed. But it’s been almost eight years now, and while things certainly aren’t perfect, I feel like I know a lot more about what to expect.
No need to apologize for babbling, Missy! Welcome to the place for asking, unloading, ranting and sharing. That’s what we’re here for. We get it.
Sounds like you’re into a pretty ugly mess of PsA, depression, fatigue, and stress, each of which makes the others worse. It’s not fun. Your profile says that you were diagnosed early this year, and that you are on MTX. Does that mean you’ve been on it for six months? Are you seeing any signs of improvement? If you’re still in pain, is it maybe time to meet with your rheumatologist again? Sounds to me like you need to ramp up the effort to get this disease under control, so that you can get on with your life.
The pain of uncontrolled PsA is wretched. Most of us know that. Could your GP maybe help you with some short-term pain relief to help you cope?
I like the way you said that you have been “battling PsA”. It really is like that: strategy and ammunition and recruits and, yes, battle wounds too.
I have only started methotrexate a Month ago, I know these meds take time, but the pain is so unbearable most days I can barely move, which is heartbreaking since I have two active little guys. Rheumatologist said there is no pain meds she can give to help with the "bad days" I feel like I've have wasted my kids whole summer.
Oh, Missy, that is so difficult for you. I know that a lot of rheumatologists simply will not prescribe pain killers. It makes sense in a way: if your disease is being properly controlled, painkillers shouldn’t be necessary. But until you gain control, things can be really rough, as they are for you now. Perhaps you could call the rheumatologist and explain how you are suffering. Sometimes a short course of prednisone can make you feel a lot better. You might also approach your GP to see whether there’s any help they can offer.
Oh, Missy34, I get where you are coming from. I too am still in a gap and working on finding balance of life and meds. I was diagnosised a year ago and still have not found my new “normal”.
My hubby and I took a break as well recently which makes an already difficult situation even harder. Working full time (physical job to top it) and having a 9,13 and 17 yr old to keep up with along with family that thinks because you look good today you have time to do it all!
If you need stronger pain meds your rheumy probably can’t prescribe them you will need to see you primary and explain how you feel and see if they will write a script. I have found predisone (which I hate helps) and norco when needed does the releif but all are only going to give temporary control of symptoms the mdx and if possible a bio will be the only long term management. Truly give them the full time to work, and they do work slowly, before righting them off.
Hope you get to feeling better soon. Hang in there though and find comfort in knowing you are not alone!
Working is not an issue for me, I left work a few years ago when my son's medical needs became too much for me to work. He is getting better good days and bad. He has adhd, anxiety, serve food alleriges, asthma, and sensory issues. Needless to say he needs a lot of attnetion, I feel so guilty for not being able to do activities with him. My husband and I are working things out and he may move back next month, which will cause an uproar for my son because he is very routine oriented. Anyone have a magic wand lol
Missy, we have so much in common. My husband and I separated in May of last year and he moved back in October. I have spent the last 10 months fighting this disabling pain, fatigue, and stress of not knowing what was happening with my body. I am on my 5th week of mtx with no response yet. I wake up many days and find myself unable to fit into shoes, other days I can’t open a door or brush my teeth. All this while trying to rekindle a marriage. While we were separated, he spent most of his time with considerably younger women. So, I find myself wondering how long before he leaves again ( because I feel like I’m 80! )We have been married 24 years this October. I try to not complain, I try so hard to be positive and smile, when I just want to curl up and sleep. He doesn’t understand how much I hurt. I have a 10 year old daughter, and I too feel like I have wasted her summer. We should be hiking and going on adventures! So, while I haven’t really any advice or words of encouragement for you, I just wanted you to know you are not alone.
I hear you Missy. It’s time for diversion therapy. Listen to music. Sometimes Classical music will help you relax. Brainwave music helps you meditate away pain. Before you sleep watch some good comedy. You can go to YouTube and find old Looney Tunes to watch. Laughing will ease the pain. Diet is important. We all need to eat foods that fight inflammation. You have to engage your pain, and your doctors. You have every right to to ask for pain medication. If the doctor doesn’t help, find one that can help!
My husband is a good man just not nurturing. We have been together ten years. He thinks I'm just giving up, but that just not the case, today for instance my ankles are so swollen sneakers don't fit. Sometimes I wishave people could see the pain. I had to cancel my annual summer party last weekend and I know some people figured it was a cop out, however it broke my heart. Doctor says it takes times, but I'm wasting so much precious time waiting for answers. I have lost so much in the past couple years, I don't want to waste anyone time. I don't want my young kids to remember mom always just sitting around, but everything is so hard lately. Thank you everyone for listening
Hi Missy I am pretty much same stage as you, new DX but not yet started mtx, and in a bad relationship place (partner thinks giving in to pain is weak, and pushing through it is the answer, I'm too tired to explain that could destroy my joints!!) I feel bad I can't go to visit my old dad as he lives 100 miles away and no way can I drive that far, my hands and ankles can barely do 20minute drive to work. So I sent him train tickets to come here. We can't make people walk a day in our shoes nor would we want to, so conserved your energy for your children and husband, everyone else can think what they like. Does your husband come to your appts? Xx
My husband says the same thing about being weak!! Which is ironic because we all know men are the biggest babies when sick. I've tired explain to him that if I'm already swollen and hurting I could do more damage, he says I need to have a better attitude and think positive, ok I'm positive I'm in too much pain to do anything. I have a beautiful rose garden that I still haven't been able to weed out and prune, even on good days my hands don't seem to work. No he doesn't come to my appointments, he just started a new job and with me not working can use all the money he can get. So frustrating took a shower put make up on and now ready for a nap! My four year old has other plans though lol. Thank god for my daughter she is 15 and picking up so much slack, so I let her get her nose pireced, we did it together lol
I think it would be a good idea to ask your rheumy or primary care doctor for some help right now. The less you move, the harder moving gets so a short course of prednisone might be something they'd consider - not just to make you feel better but for the sake of your joints.
Methotrexate does take time to work. It seems harsh to leave you without any remedy for the pain meanwhile. The sense of life passing you by is horrible and makes it very hard to believe that your situation will improve, but that will very probably come in time. A day at a time I think ... and allow yourself to feel proud of every single thing you do to get through each day.