Hello everybody! I was just recently diagnosed with PsA about two months ago after years of health issues. Im a 25 year old male and like most my age have been trying to figure out exactly what id like to do with my life. Well the last 3 years Ive been a commercial/industrial electrician and love it! Unfortunately, over the last year and a half ive slowly been losing my ability to do more and more of the physical aspects of my job. I just did my 4th dosage of methotrexate and am hoping it starts to help. Im trying to figure out am i wasting my time in this career path? Will i make it worst by working with my hands more than the average person? Did anyone else have to reconsider their career after a rapid decline of their health? I would really love to stay in this career but ive only been able to work a few days in the last month and have to pay my bills and my savings are starting to run dry. I had major plans and am in place to partially take over a very large electrical contractor in NC. Ive invested my time and worked hard to get in the position i am now. I was going to a local community college to get my license quicker and learn more. I originally was going to go last year but it got pushed back because of my health. Im considering enrolling this year but am not sure if ill be able to do it. It would really suck having to start from scratch and find something else i enjoy as much as this. My boss is very considerate and we have talked about doing some other aspects of the job like estimating. I just would like to hear from somebody else with their thoughts who are going or have been through something similar. Thanks so much!!
Hi there and welcome too.
Now at least you’re on a medication path which should help. The bad news is that all of the meds used to treat PsA take some months to get going. The good news is that many of them work very well indeed. Patience and pacing is key. And the better news for you is that you’re young. So that means you’ve the best chance of getting ahead on this disease as new meds for for it are being developed all the time.
I developed PsA aged 54 and I still work aged 61, albeit my job is at a computer using my brain rather than also needing to be physically active doing my job too. Thankfully the pandemic now means I work from home too. But I am otherwise active, walking my dog daily and going on holiday which invariably means walking or boating.
Motion is lotion for this disease but careful motion which is where the pacing comes in. It is easy to overdo things. But as your meds work, it’s also easier to continue to just do. Much depends on how well the med works for you and each of us react differently.
So I wouldn’t rush any career change decisions just yet but I would widen your experience to include for example estimating too.
I hope this helps.
Thank you for the advice. Hopefully ill be able to get back to work sometime soon. It seems i cant do much besides wait and see. Im thinking Im going to hold off on the college/trade school as well for now. I hate having to put my life on pause like this. Im also having a lot of issues learning the fine line between staying in motion and rest… everytime i feel decent i over do it and ultimately feel worst for days afterwards. Its hard going from an active lifestyle to what seems like the life of an 80 year old man! Lol The only thing ive found that isnt so hard on my body is swimming. Do you have any other recommendations for staying physically active? Im thinking about trying yoga. Sorry if it sounds like im whining i know many on here are going through and/or have been through much worst im just trying to get a general idea of what my lifes going to be like now with this disease. It feels like im deteriorating extremely fast. Has any diet, lifestyle choices, shoes/orthotics, stretches/exercises or anything besides the medications helped with your symptoms? I know they wont stop with the progression of the disease but anything to help the symptoms until the medications start working would be very helpful. All recommendations are welcome. Thanks again!
Hey welcome here @JoeF! @Poo_therapy has given you good advice so I’ll try not to repeat her. I’m 63 next week but inside I feel like a 25 year old. I understand your concern as I was also a tradesman for 43 years but had to make some changes due to physical restraints. We can talk more about that later. Can you tell us a bit more about how PsA is affecting your body?
Thanks for the welcome @Amos @Poo_therapy but Sure thing it has been affecting pretty much all of my major extremities. Hands, elbows, knees, and ankles. Not so much the actual joint but the areas all around them (tendonitis/enthesitis is what the rheumatologist calls it). Sometimes its just a few areas bothering me other times it seems to be all over and my body shuts down on me. It definitely correlates with physical activity. Sometimes i wake up feeling horrible other times i wake up thinking its all in my head but within a little while of doing the slightest physical activity the pain/fatigue comes on. I find its worstens with repetitive movement, even simple things like brushing my teeth i would have to take a break about half way through because my bicep area would start burning (this was before prednisone that seems to be a temporary fix for smaller tasks) Lately its been bothering me less during the actual activity and more after i stop so it seems like i might be heading in the right direction. But then again i have been taking it very easy the last few weeks. I was big into wrestling so the best way i can describe it is after youre extremely dehydrated when cutting weight and did a difficult workout your body just shuts off on you after exhaustion hits. The cramps just hurt much worst in this comparison lol
So very typical of what PsA does sadly. Pacing is paramount - google the Spoon Theory - it’s utterly brilliant and explaining what pacing is all about. Pacing is boring and tedious though but it works. Swimming, yoga, pilates, etc is all good exercise to do but in a paced fashion as in stopping before you want to. Some people find riding a bike is OK too. You’re presently in that gap just waiting for the med to do its thing. So patience and lots of self care is all you can do. Using heat and ice swapping it over every 5 mins on your most troublesome area and keep going for around 30 mins can ease things down too. Many of us take prescribed anti-inflammatories and pain relief too.
It’s so hard at that point. You’re just starting out. I wasn’t diagnosed yet at your age, but I was symptomatic. What I was dealing with in my mid twenties was severe back pain, that I ultimately had surgery on, twice. I was faced with the same questions of my career path. I had been working in a research lab in the agricultural field, and was aiming towards a career in cooperative extension. I shifted paths to teaching, as the education part of cooperative extension was what I was most interested in.
I had to figure things out again in my early thirties when I had kids and autoimmune stuff popped up.
If this is the field that you love, then it sounds like there are some options to stay involved. You could also consider getting a degree in business to move more to that side of the business.
In terms of activities, any type of gentle movement is likely to be helpful. I tend to walk a lot, but I also enjoy riding my bike, kayaking, paddle boarding, snow shoeing, hiking, etc. You could also request a referral to an occupational therapist. They could work with you on joint protection and hand/wrist comfort.
Based on my roughly 4 year experience, I’d suggest that you find ways to delay firm decisions regarding what or who you will be in the future. PsA has such a mysterious side to and you could find that your abilities, gifts and aspirations are quite attainable once you are on “the good stuff”…biologics etc. Or you may bounce around for a while as your rheumy tries to hit a match for you. Delaying career choices etc. might be the best thing as you are figuring all this out. The way you described the way that you feel is like a mirror image of my situation. I don’t think that I have any permanent structural damage to my connecting points as of yet but the pain and fatigue is very real even though on Rinvoq. I am able to function and do most tasks but not with the same zip that I once had. If I have two good weeks, I think I’m in remission and then get walloped for enjoying myself. I can relate with your experience of feeling good while active but then paying for it later. We live on about 100 acres in the country side just North East of Winnipeg. Because we get 80% of our winter heat from firewood, I always have a built in exercise plan…cut, spit and stack firewood. While working last week in -25C, I was feeling warm and loved the activity. Adrenalin seems to kick in and I can do 2 hours of swinging an axe and wielding a chainsaw…BUT, 2 hours after I stop, a cloud of fatigue and whole body pain sinks in. My hands don’t want to work, shoulders are complaining, feet are awful etc. and I clutch the railing going down the stairs. Was it worth it? For now, I think so as the exercise doesn’t seem to be doing any damage…the pain fades back to my “normal” and I do it again in a few days or a week. Everyone has to find that balance, inactivity certainly doesn’t make things better but rest is very important. The way that you sound, I would press the rheumatologist regarding a faster route to biologics as you are quite young and want this to be held back as long as possible. I could be wrong, but I don’t think too many live on methotrexate long term…most advance to more sophisticated and effective meds.
Thank you @Poo_therapy im going to look into the spoon theory now! Hot epsom salt baths have been very helpful, cold seems to have the opposite affect
Hi joe. Great info. My situation is different so I’ll touch mainly on methotrexate. The replies so far have way more info than me. I just hit 73. Psa hit me like a tons of bricks when I was 69. My fingers were on fire, thought I could treat them myself. Nothing worked so went to the doc. Long story short diagnosed with psa. I’ve always been very athletic, coaching, playing lots of sports. Rhuemy started me off with 20 mg? Of mtx and sulphasalazine. The mtx made me feel like crap (woozy) for a day or two after the injection. After a year she dropped it to 15mg. Some point during COVID one of my blood scores was off, so she put me up to 17.5. Turns out everything was fine with my blood. Been on 17.5 for a year or two. Not woozy at all. Since going on those meds in 2019 I have had zero problems or systems, none. I do whatever I want to do and don’t feel a thing. I told her one time, “I think I’m cured, can we stop now?” Nope.
My point is- give the meds some time, alter them after awhile if you want, if you don’t like your rheumy, find another one. It may take some time to find your groove and you might be ok doing what you love ,sure hope so, if not, buy the company, and work when you want!! Hope things work out for you. PS this group is amazing, helped me through some ugly times, accepting psa.
Thanks for understanding @Stoney luckily my back hasnt been bothering me too much and im very grateful for that. I know back surgeries can be very difficult and dont have the best success rate. My mother has had two back surgeries as well and after they didnt help much decided to make an appointment with my rheumatologist. Turns out she has other autoimmune issues besides her MS that likely caused the back issues. But back to the topic, i would very much like to stay in this field. Even if its on the estimating or engineering side. Another big issue is i always wanted to start my own thing (i planned this before even starting the job) and now i dont feel very comfortable with having such a big impact on others livelihoods when theres days i cant even function. But i might just be thinking too far in the future
Wow thanks @Amos thats very relatable! Sounds like you know exactly what im going through. Like you, there isnt much structural damage but it sure does feel like it some times. I have told my rheumatologist that i would like to be very aggressive with my treatment and he agrees. We are reassessing on March 6. There are a few people in my family who are on humira that have gone from barely being able to walk to almost completely normal. That would be amazing. I dont want to have too high expectations neither… i find its best to hope for the best but plan for the worst. I feel like i know all i can do is wait this out and let the medications help but i cant just sit around idling for multiple years especially during my “prime years”. Not only that but how am i supposed to pay my bills during this time? Im probably going to have to move back in with my parents. Did any of you have to go on disability during this time? Can we even get disability? Im starting to think i should find some mind numbing desk job and try to do what little work i can, i dont want to be a hinderance to the system if i can work a job like that. The mental aspect is just as frustrating as the physical aspect, trying to figure this all out.
Thanks @wisc72 and im happy the medications helped! Hopefully ill be able to say the same soon! It seems like most are diagnosed at an older age, its weird it started hitting me so young. It hit hard over the last year and a half but i felt i had to put more effort into everyday things for years leading up to that point. I just thought it was bad genetics or because im a bigger guy and have abused my body with sports. Also injuries wouldnt stop nagging me… broken neck, shoulder reconstruction, etc with daily migraines. So it was very hard to tell the difference between those old injuries and underlying health issues up until about a year and a half ago when it became unbearable. I think thats a big issue with me right now. Im no where near comfortable or where I want to be in life. I didnt get to do the things i wanted to do and now theres a chance i wont be able to do them.
JOE first of all I hope you also consider the grey areas of other perspectives. FIRST IT SOUNDS LIKE YOU GET BENEFIT S.after all your seeing a doctor.With that assumption you will have to consider a different path within the job.However you can train etc.So many opportunities for you.But the benefits should help guide your path and that the disease is just a obstacle.It has its ups and downs .Eventually you could own your own business.Seems unattainable…you say…No.ask yourself what motivated you and dont get sidetracked by the diseases Perseverance determination.YES theres resources …but they have limitations.STAY WORKING.Its good for you.Ask to rotate duties.LASTLY IF this backfires pick yourself up and start again.There are no guarantees. YOUR in the drivers seat .Best to you.
Thanks @creativefluff in my case i have no intentions on long term disability. I was jusy wondering if working with my hands instead of a more mental work type of job would make things worst. The disability question was about short term disability (if i were to stay in this career path) while im waiting for my medications to work because of the physical aspect of my job i can’t just ride it out and keep working. But im going to talk to my boss tomorrow about doing estimating again to see what we can do so i can hopefully get back to work again
I was initially diagnosed at age 59 - although, like others, I had been symptomatic for years - when my right knee disintegrated in a very short time. Following the replacement, healing dragged on for months. I was using a walker, and feeling like I was 85! SO much pain and fear. This site saved my life in the « gap » between diagnosis and the meds taking effect. I managed on oral mtx and Leflunomide until I was 65, when I became eligible for government funded meds. (My second knee replacement healed in six weeks!) I’ve been on a combo mtx/biosimilar regime has worked really well for me. I’ve been able to exercise consistently and feel pretty close to « normal » most of the time. I empathize with you, and suggest that you look forward to all the medical advances that are sure to come in your life.
Thank you @Susan2 its very much appreciated and im so happy the meds are working for you! I had an appointment with my rheumatologist yesterday and am very optimistic about the future
Hi there! I haven’t posted in a long time but for you I have to reach out. I am a licensed industrial millwright and electrician for over 25 yrs. I was diagnosed around 8 yrs ago and thought life as I knew it was over. I know your struggles first hand and the unpredictability that comes with this disease especially in an industrial often high stress atmosphere.
I absolutely love what I do and can’t imagine retraining and have had to step down from some leadership roles that would be easier physically but required me to be almost 100% reliable. This work is physically hard, requires tons of focus and concentration and good communication. Some days that just isn’t possible but with proper meds and sheer determination most days are.
Not sure if you have considered biologics or have been offered them yet but for me they have been a game changer. If it wasn’t for Humera and now Cosentyx my career would for sure be over. I went from falling asleep every time I sat down, throwing screwdrivers when no one was looking, crying in the bathroom to being able to be the “go to” person again.
Reading what you wrote brought a lot of memories back for me and I know how difficult it is for you right now.
I would be happy to share or answer more questions here or if you rather message me individually. This type of work is far different than most (no disrespect to any other professions evey job in my mind is valuable or it would not exist) but I’m sure you knew that going in. Laborers don’t candy coat and we love to tell the “how hard that job was” stories. It takes a certain mindset and skill that is becoming rare to find. If your employer is willing to accommodate you and support you to the level you describe you must be aan amazing find and they probably believe in you more than you might yourself right now.
The gap between diagnosis and proper meds is the hardest time both mentally and physically but Iit does get better. If you have the opportunity to hold off until you find your new normal making the decision to change careers or see it through will be clearer and you have peace of mind knowing what decision to make.
Thank you so much @Rachael thats exactly what i needed to hear! I think i am finally seeing some minor improvements. Im now at the full dose of methotrexate and my hands arent shaking in pain after what i used to consider “minor work”. My doctor wants me to try 2 more months on the methotrexate before trying Humira. I I have 2 family members on humira and it has been a life saver for them so depending on how I feel at my follow up that will most likely be my next step. I am going to stay in the electrical field and if i have any questions will definitely send you a message! Thank you again!