Hello i'm 23 and I am from Wakefield in the Uk (near Leeds). I first started with symptoms when I was 17 and have just been diagnosed at 23. I was repeatedly laughed out of the GPs with one doctor saying my shoulder pain was due to how I wore my handbag. It's felt like such a long process. I recently started methotrexate and I am waiting for that to start working. I just feel so lost in it all. I recently got married at 23 and feel like my poor husband is having to take on more and more. We are both teachers and he is an Newly qualified teacher at a secondary school and is often awake at 1 in the morning marking english books. I just feel so guilty that he has to look after me at times too.The other day my flare up was so bad he helped me get in the bath and I couldn't wash my hair or get out without his help. Not what you want i your first year of marriage. I am so tired of being in constant pain. I teach severely autistic children with severe behavioural needs ranging from 5-7 and I love my job and love my children but I really don't think I can do it anymore. I pulled my back last week and all my joints flared up and I have two days off work. My boss suggested that it may impact my temporary position becoming permanent and wasn't sympathetic at all as I have had a few absences in the year i've worked here. I just feel so tired and so down at the moment like there isn't a way out. No one I know seems to understand what it's like especially seen as I am so young and people at work don't seem to believe or realise how much pain i'm in.
I try not to complain in real life so I guess I just needed somewhere to write these fears and annoyance down. I just don't know how it will get any better. My family are dealing with another family member with a terminal illness so I feel even more alone as I don't want to burden them.
I'm looking for the ;what's next. What to do about my job and life how I can manage it all! One step at a time..
One step at a time, Charlotte. It will get better: most people find the period after diagnosis and before therapy starts working the most difficult. Unfortunately, that period can last several months. But it will get better.
Hi Charlotte. I have had PsA for 10 years and I'm also on Methotrexate. I have had similar periods over the years so I know exactly what you feel like. It can be very consuming but I agree with Seenie, try and focus on the fact that it will get better. In my experience Methotrexate takes around 6 weeks to start working. I take Ibrupofen for short periods to control the pain and this works well for me.
I’m with you in your struggle. Was in your spot a year ago. I am taking methotrexate, Meloxicam, a steroid(which I am weaning off of) and folic acid. I do take pain meds as needed. Perhaps it would help to try to celebrate the smallest positive change. That has helped me tremendously. I can actually put several plates in the kitchen cupboard at the same time now. Little gain, yes, AND a lot to celebrate. I get out of bed every morning thankful that I can do it by myself. I’m finding that it’s often the little things that make such a difference. Many blessings to you.
thank you for your support. I will try to notice the little changes as they come. I know it will get better eventually i'm just impatient at the moment I guess. I think the hardest party is you put up with it for so long thinking before you eventually get it diagnosed and it just gets so tiring. Feeling more positive today after all the comments.
Get in touch with Access to Work it’s a government funded scheme to help people with disabilities such as arthritis to stay in work and find work. I’m just back to work after being of nearly 9 months and thru access to work and with the help of MTX I’m now back to work with equipment to help me, I have voice activated software and other adaptations to help me do my job. Sending you strength and hope. You a lucky to have a man that cares for you. I know how hard it is to accept help I’m only 35 so quite young for PSa. Good luck C xx
I should have said MTX had started to work with me. I definitely am not as swollen and red as I was. I still get like that and take pain killers every day but I’m back at work on struggling with full time days. But it does get easier i promise you just have to learn to be patient and as people have said notice the small things as they make a big difference xxx
Dear Charlotte. Take it easy dear. I am down with plaque psoriasis followed by artharitis now. it started also my prime age of 28, when about to get married. i felt the same way, as u do. Hence, can understand you well. All our brothers and sisters also feel the same. I would look at it this way, we are one special people and we have a great way to moveon in life. You are fortunate to be part of a country where state can take care of medical expenses. I live in india where i have to pay close to usd 1000 per month for enbrel and no mediclaim facilities as this is self-injectible ones. I am also on MTX.
Apart Nsaids, I would say to reduce joint inflammation pain etc, you may start taking Boswellia Serrata (as this is safe and can be taken full life). It reduces inflammation and it is available in various brands including amway/nutralite. In india, this is cheap and available in ayurvedic medicines as well. Try tinefcon capsules for skin issues, if you have one. Start learning yoga and meditation and this will reduce pain and make you feel happy. Read Psoriasis cure books/testimonails written by patients themselves and be a learned person. Start Praying for you and others coz Prayer is very powerful and if possible, be part of spiritual courses like art of living or anything else in country. you can try ayurvedic treatment in india as well. Be in a warm place and enjoy every moment of life. god bless. Regards
Thank you everyone. I am with a rheumy and have a rheumy nurse too but my headteacher/boss gets really annoyed about the amount of appointments i've been having. Starting physio for my left shoulder and shoulder muscles and do Pilates on a Thursday which is nice. Does anyone know what can help diet wise? Is there anything I should add/cut out?
Charlotte, sorry things are so rough right now. You’re lucky, though, to have a rheumy nurse at the end of the phone. Make sure that you consult with her as often as possible.
I am a retired teacher, and I’ve done quite a lot of union work. Someone earlier mentioned visiting your boss with a union rep present. VERY good advice, if for no other reason than to impress on the head teacher the gravity of your situation.
As for diet, some people do find that diet helps with symptoms. For me, it’s a low-carb regime. But never lose sight of the fact that symptom reduction isn’t the same as disease control. While you might feel better, PsA can still be doing dreadful things to your joints. That’s why diet is not a substitute for consistent medical treatment.
Take a look at the Complementary Therapies section of the board. There are some great ideas and wonderful advice there!
Hope you’re feeling better soon. This is just a really bad phase, between diagnosis and finding treatment that works. We’ve all beeen there.
I understand exactly where you are, I was diagnosed at the age of 24 just after my 4th child was born with PSA and went on Methotrexate injections at first then my doc prescribed pill form once I was in some sort of control. It took awhile to work I remember but once it did I did fairly well, up and down a lot of good days and then the bad set in too, It's been like that for me for many years while taking methotrexate. I eventually was moved to I.V. therapy, I get an infusion of Remacaid 700mg every six weeks now for me, it works wonders, it does suppress the immune system and I do find I heal slower and stay sick longer now if I am ill or have an infection or cut/wound. But it has been the best meds for me and my body. I still have flares that take me down though and I get injections when it does or go on a week long dose pack of steroids something I don't do often but need to at times. I hope your body begins to respond and your on the mend soon. Best wishes to you.