I'm a little freaked out. I haven't been part of this community long. I've been living with my PSA sx since about 17 though (was told I am a rare one, I guess). I am getting to the point in my life where the pain and fatigue are taking a substantial impact on my activity level and work performance. I am a major Type A personality stuck in a Type B body! So slowing down is not in my schedule. I found this site with the hopes of learning how to better manage PSA and surely there must be some better med management as well. But as I read posts, I am seeing a pattern. Disability. This scares me to the core. I am a Dialysis and clinic nurse (LPN). I am in the process of finishing my RN. I am 40. I have put off many of my goals until my kiddos were older. I am in my last 2 semesters and struggle everyday to get the littlest tasks done. I am meeting a new Rheumy on Oct 11th. It isn't soon enough. I am only on Celebrex at this point. Mtx did little for me, or so I thought. Now that completely off MTX, I am realizing how bad I got and what it was in fact doing for me. I am scared. I don't want to be on disability, but everyday I have to go to work, I want to cry knowing the pain and fatigue I will battle all day. Ugh. Anyone with some helpful advice?
Hi Pippy72, this is Ollie. I am also a nurse with a demanding schedule and have the same fears. I think we just have to take it one day at a time and learn to rest as much as possible when we are at home and try to reduce stress as much as possible. I have only been diagnosed for the past 2 months and it is scary for me also. Finishing your RN will open more doors for you professionally. One of the great benefits of being a nurse is there are all types of jobs we can do. Telephone triage etc. I will continue to do my current job as long as I can, because I love it so much, but it is physically demanding and it is a comfort to know there are other options on the market if I physically am unable to continue it in the future. Best wishes.
Do not panic. That will only cause more stress & stress makes the flares worse. I too did not have any improvements on MTX. The next step after that for me was enbrel. For me that had no effect either so I now get infusions. It usually takes awhile to find a medication that works for you. Each new medication that is tried has to be tried for 3 months before you can tell if it working for you. Patience is the hardest when you are in pain, when you see yourself going down hill FAST. I am sure there is a medication that will work for you, it just may take a little while to find it. In the meantime I am sending HUGS your way. Please keep us posted on your progress.
PsA is NOT a one way ticket to disability. I am 31 and for a living I teach martial arts. I go hiking in the woods with my family several times a week. I also enjoy shooting pistols, rifles, and shotguns. I exercise and stretch about 90 minutes a day M-F. I cycle around 100 miles a week. The day after Memorial Day this year I could barely walk and my hands were completely useless. Now, thanks to mobic, prednisone, Humira, and the occasional tramadol, the only restriction I have is that I can’t hit things with my hands or feet. I haven’t been on here much because I’ve been too busy enjoying life 
I know an ER doc who has had PsA for years. I have a student who has PsA and is gradually taking his life back. I know a great guy who has PsA and still goes scuba diving with his sons. PsA is not the end, it just means some changes. Be very honest and upfront about your fears when you go to the doctor. Also, don’t try to be the tough guy and ignore or downplay your pain-if its hurts, there is damage being done. Talk to your doctor, open up to friends and family you can trust to be supportive, pray (if that’s something you do, it’s been very helpful for me), and whatever you do, DON’T GIVE UP HOPE.
I am in the same place right now. Not a nurse but a physically demanding one, I do hair, and I was recently told by my rheum that she’s not sure if I can continue working and after some questions she said “there’s always disability, we’ll cross that bridge when we get there”. Scared the hell out of me, first thought, what about my clients? Then what am I supposed to do? I feel your same anxieties, I’ve been trying to figure out how to make myself not freak out and to be honest, I don’t think I have yet but I know it only makes me feel worse. I hope you find meds that work for you soon, I just started mtx a couple weeks ago, not sure if its doing anything yet, but trying it out! Hopefully when we both get on the right track we’ll be able to do what we love without the constant pain and fatigue, I wish you well
Just know you are not alone. Without getting into the “me too” I have been living with this sense I was about 17 also… you will learn your balance. Try not to dwell on what you can’t do, but focus on what you can. I know its hard not to freak out, and we all have those days. These are the cards we were dealt. Learn what you can. You can reduce your flares with diet and exercise, but talk to your rheumy. Read old posts here. And just know you aren’t alone.
Hello there, I know the physical strain of working in dialysis, its my career choice too, but as had been said before there are plenty of other less physically demarding roles within nursing Carrying on with your training would maybe help you when you feel you can no longer stay in dialysis. Last year I was in so much pain I couldn’t continue to work and was on long term sick…I was so afraid that I wouldn’t be able to continue working …but MTX started to work with me (it took 4 months to start) and I slowly began to return to work. I took advice from the rheumatology staff, worked with the OTs and ate healthy foods and most importantly for me began to gently exercise, swimming walking Tai Chi. I have the option of being able to adjust my working day to help my body. I often find the static position needed to put patients on and take them off treatment exacebates my SI joints so I do more stripping and cleaning of machines on those days to keep me mobile. I do my paperwork in small parcels so I don’t sit too long and stiffen too muchn but have time to rest my body.
Be patient and kind to yourself, get your treatment sorted and if you need to give yourself a break from work, do. The further downhill you go the harder it is to get back up there.
Ask yourself what advice you would give one of your patients in the same position as you?
Good luck, I hope meds start working for you, it is possible to get from being completely riddled with pain to back working and in the job you love, I’m proof of that
I too am a nurse (RN for 18+ years). I did all my years in hospitals and outpatient surgery centers. I lost my job one day after struggling through 12 hour shifts in pain and misery, and found another soon after. I got injured on the job within 6 months, and made myself an instant target. I soon lost that job as well. I thought my life as I knew it was over for the worst. My higher power had other ideas. I began researching options for my nursing career and found home health care. It is perfect for me. I don't lift and transfer anyone. No pounding hospital floors for 12 hour shifts, and I sleep at night rather than work it. Like Ollie mentioned, there are so many options once you have an RN degree, including managing LPN's. Keep up your schooling, as it will save you later on. Meds will help once you're on the correct one for a time. Keep posting, it helps.
I feel your pain and fear. I’ve been living with PA for 17 years and have many physical demands as well. Enbrel saved my life. I struggled with the cost up til this month when I found that enbrel has support financially. One day at a time and prayer is the only way I can deal with my fear. I’m also a recovering Alcoholic, so one day at a time has become my mantra. I have made many lifestyle changes to better serve my physical limitations. Losing weight, eating right and changing all that is in your power to change including your own positive attitude will help. It is a scary disease, but I feel that advances in medication are made every day. I no longed fear my meds, ive put my outcome in Gods capable hands. It helps! Good luck with your new doc. And enjoy this day!
Although meds for PsA are absolutely essential to try to decrease pain and joint damage, I have found that a gluten free diet, acupuncture and mild stretching and exercise along with meditation to ease the stress is essential to balance the stress my body is enduring. If I stop doing these things I feel it, you will feel like you have some control over your body again. If you try acupuncture, go to a true chinese medicine professional. This is a licensed professional ( they do not have to have studied in China, there are may good schools in the U.S that train great practitioners) that has finished undergraduate work and has enrolled in a graduated program for chinese medicine and acupuncture and has either a masters or doctorate degree. It is equivalent to western medical school and requires 4 to 6 years to finish. Do not go to a chiropractor or Western MD that has taken continuing ed credits toward acup so that they can practice chinese medicine. Many states allow non credentialed practitioners to practice acupuncture. Acupuncture if done correctly is a very powerful tool to balance all the body systems not just control pain. If done incorrectly in can cause serious consequences like pneumothorax. Good luck I hope this might help you gain strength again.
Hi Pippy,
I was a type A person too. It may sound funny, but my Kindergarten classes were the first ones to get anywhere in the school as they followed their teacher. Gee, by Christmas I was almost done with the whole curriculum because I was so "busy", could not stop teaching.
Well, This disease slowed me down. I have learned that at first I get angry and I fight and cry, then I accept it, and then adapt. Change is inevitable. If the water in the river that is now is not the same that is now (a few seconds later), we also change. Our bodies change (we get older) and our minds change (we mature). I get things done now and it takes me a little more of time than it did before. I have adapted to accept it and do not mind taking my time.
Thanks so much for having such a positive attitude. I feel much better after reading your post. I was diagnosed last year with psa ( but i know I've had it for many years). I, like so many others here are very frightened, having to deal with intense pain and losing our independence little by little. I am at the point to where mobic no longer works so I will have to make the decision in the next few weeks to try a biologic. That in itself is scary for me since so many family members have had cancer. I hope that soon there may be a cure for this awful disease or at least better, safer treatment.
I am trying to remain positive but I am having a hard time. Right now, I must be having a flareup because every joint in my body hurts so bad. People like you help alot when you can share a positive attitude with others not feeling so positive at the moment. Thanks again. :)
bumble said:
PsA is NOT a one way ticket to disability. I am 31 and for a living I teach martial arts. I go hiking in the woods with my family several times a week. I also enjoy shooting pistols, rifles, and shotguns. I exercise and stretch about 90 minutes a day M-F. I cycle around 100 miles a week. The day after Memorial Day this year I could barely walk and my hands were completely useless. Now, thanks to mobic, prednisone, Humira, and the occasional tramadol, the only restriction I have is that I can't hit things with my hands or feet. I haven't been on here much because I've been too busy enjoying life :) I know an ER doc who has had PsA for years. I have a student who has PsA and is gradually taking his life back. I know a great guy who has PsA and still goes scuba diving with his sons. PsA is not the end, it just means some changes. Be very honest and upfront about your fears when you go to the doctor. Also, don't try to be the tough guy and ignore or downplay your pain-if its hurts, there is damage being done. Talk to your doctor, open up to friends and family you can trust to be supportive, pray (if that's something you do, it's been very helpful for me), and whatever you do, DON'T GIVE UP HOPE.
I have to have a positive attitude. The only other option is to give up and, to be honest, I’m too stubborn and pig-headed to do that As far as being afraid of the biologics goes, I’ve been there. My wife and I thought and prayed long and hard before deciding for me to go on Humira. In the end it boiled down to slight increase in cancer risk being better than guaranteed destruction of the joints in my hands and feet. One of the most beneficial things for me has been to look really hard at the choices I DO have and pick from them without worrying about the choices I DON’T have. If you can’t change something, don’t let it bug you. It’s really simple in the end (notice I said simple, not easy). Good luck
Hello Scared.
The best advice that I can give anyone is to eat as healthy as you possibly can. Cut out any processed or refined foods and chemical addatives.
I look at it this way your body need every bit of nutrition it can get to help you fight back.
Mtx has been around for many years. I sometimes felt it is not working for me until I cut it out and got so much worse so went back on it and I feel better than I did, but it is still not good enough for me to feel well enough to manage the life I would like.
Try not to get stuck in the being scared mode. Try and do things that might help you. I go through a range of things like massage, heat and ice, TENS unit. Acceptance is not easy but it is necessary to be able to move on even if you have to grieve the loss of the life you once knew. Get help with this if you need it.
I wish you well
Bella
Bella that’s just so true, acceptance is a key to getting on with life, acceptance doesn’t mean giving in, I will always fight and carry on cos I’m as stubborn as a mule, but when you accept the condition is here to stay you can work out how you can best deal with it. If you can’t work through your fear, grief, anger get help from a professional. Several years ago I had counselling for personal reasons and have used what I learnt then to help me through this.
Live every day - one day at a time....realizing that the advances they are making with this disease are the best researches have ever realized. I want to hope for the best for my daughter and will be there to support her when she hurts, or feels cheated out of her youth, worries about fertility, scared about all the hectic meds, etc. We are hoping to get Lauren on a regime of healthy eating and exercising. Someone is sitting her beside me and said he watched, "Fat, Sick and Tired"......about a guy who juiced his way to healthy living. I will research and try ANYTHING looking for that light. Keep up your spirits....you are working in a field where you are a gift to others and their healtth.....thank you!
LOL, had to read that twice. In the bodybuilding world, “juiced” means he used anabolic steroids. I assume you mean squashed fruits and veggies :)
Pippy, I really want to encourage you because you WILL get better. I agree with Bumble in every way! The key, in my opinion, is to find the right doctor. I am amazed, when I read posts here, how many people are living with daily pain and fatigue. I have had PsA for at least 12 years, and I will not settle for that kind of life. Flares are inevitable, but when you have one, go to the doc and get on a course of Prednisone- it works wonders! Maybe some people have such advanced disease that they cannot do better because of their condition, and that their docs have told them as much. But I am here to tell you that when you find the right doc, you will not live with daily pain and fatigue. You need to be upfront with your doc and let him/her know that you will not accept that kind of life. There are disease modifying drugs to slow down the damage, and pain meds and anti-inflammatories to help with the pain and fatigue. If your doc won't give you what you need, find one that will. You have an aggressive disease; find an aggressive doctor, if that is your style! My thought on taking DMARDs and prednisone, etc is this: I don't care if my life is cut short because of the drugs I'm taking. My concern is to have a great quality of life NOW. If the drugs cause problems in the future, I'll deal with it, but why suffer for years and years, and go on suffering until I die? We all die sometime, and personally I am not afraid of death because heaven is better than anything we have here! I too, am a nurse and doing Home Health Care at the moment, which I am really enjoying. I only work part-time, and on those days I double up my pain meds. My doc is fine with this, and I've been on tramadol for a very long time without developing tolerance because I am actually very careful with how I take it. I hope you are a person who prays, because God will lead you to the right doc. But if you don't, I will pray FOR you! You're gonna have a great life!!! God bless you, friend.
Hi Pippy,
Though I am not a medical professional, my advice would be to talk to your Doctor about a Biologic to slow the progression of this disease before more damage is done to your joints and to your body in general.
Though I do not know as many of the newer members, I can safely tell you that nearly everyone I have known on this site are type A personalities. The best was to stay active is to be proactive with your meds and remember that nothing can take the place of rest, yet staying still too long can cause problems of its own. There is a balance, finding it and maintaining it are very important.
I hope this helps you!
SK
Don't freak out just yet.. PsA is tricky.. not every med works the same for every person.. MTX did nothing for me.. however, the Remicade infusions that I have been on for the past year have worked phenomenally! I actually started symptoms by 13yrs old and by 19 could no longer squat.. I am now 32 and was just diagnosed a little over a yr ago. Went through pills after pills and surgeries after surgeries because of misdiagnosis. Let me just say, before Remicade, I was SUPER scared.. I could no longer climb stairs and was in pain with every little step and I am also a Type A personality.. If you want to be able to be pain free/tolerable, don't just write off Biologics like most people do.. For me, it was well worth the "possible" side affects in order to live a "normal" life. I can now RUN up and down stairs and play with my kids.. There is HOPE!!! I promise :)