Feeling defeated

Hi all, I’m new here, only been diagnosed for a few weeks so far so obviously haven’t found any drugs that help yet. Feeling defeated at the moment as a computer science student on a work placement my worst pain is in the worst place possible, my arms and wrists. Do most people get the ‘why me’ feeling at first. I don’t think this has completely sunk in yet and I underestimated how much it really would affect my life. Trying to juggle trying drugs, pain, an amazing but not easy work placement and worrying about how this will affect my final year at uni is starting to get me down. I am fortunate in one way, my fiancée is studying sports therapy at uni and she helps me a lot! But at the moment I feel like my life is kind of on hold for it…

Why me is a very common feeling. While it affects your life a lot, you'll likely find a new normal within the next few years. I was diagnosed 6 years ago, when my second child was just a year old. I would cry in pain when my kids held my hands, needed to rest all of the time. It's not perfect now, but I'm active most of the time. I even just took on dog walking 2 afternoons a week for money. (I'm a stay/work at home mom). My pain level is within reason on a day to day basis, but clearly there are moments when it's not.

Allow yourself the opportunity to wallow a bit, and then keep moving forward. It's a type of grief, so give yourself some leeway. It DOES take time for any of the meds to start working, so it's not too surprising that you haven't gotten a lot of relief yet. Many times the rheumy will start people on a steroid dose pack or NSAIDs, just to start working on the inflammation.


I’m sorry you are going through this while you are at school. I often worry that my daughter will end up with this disease; I hear her echo so many of my early complaints. She is also at college. I don’t know about other people, but I did say, and sometimes still do, " It’s not fair." (Or variations). Hang in there and be proactive in finding a rheumatologist who will listen to you. Once you find a treatment option that starts to help (it takes time and you might start to think it will never happen) you might even be able to find the silver lining in your disease. Maybe you can help others or will become more patient? Hopefully there is a blessing in there somewhere. Keep searching! Look for Rheumatoid Arthritis Guy on Facebook (or he has a blog). I think he is really inspirational in dealing with the emotional drain of this disease. Be strong!!!

Thank you both for the advice! The only trouble with a rheumatologist is the very long wait for appointments on the NHS. I have to wait to see them again until sometime January at least now. I just dont want to miss out but I already am. I do hope your daughter doesn’t have to go through this too! Hopefully find a silver lining soon!

Oh yes. Why me? Oh yes. TechGeek you're absolutely right to think this and it isn't necessarily a persistent state of mind, but it is a common one. It took quite a bit of therapy for me to get over that one and to get to "why not me?" I mean who else would I wish this on, you know? I spent a lot of time with "I think I'm crazy" because one day one thing would hurt and the next day it would be something else.

It must be really tough on you right now with your placement. My hands have been giving me hell lately so today I broke down and wore my compression gloves (fingerless) at work. They're pretty ugly but they really help as they trap the moisture all day. They look like wet suit material. Got them from Amazon.com. Anyway they've been helping. Can you get a negative tilt keyboard tray? And a really good ergonomically designed mouse? I know these things cost a lot but they can REALLY help take the edge off. Maybe your employer can help? Just a thought.

Well, that's all I got for you. You just hang in there, OK? January and your appointment will come soon. In the meantime there's Quality Street and Roses to take away some of your pain ;) I always associate them with this time of year.

I'm not sure how universities work in the UK, but here in the US there are disability offices where you can get services to help you complete your courses: voice software, notetakers, preferential registration so you can get class placements that give you enough time to get around between classes, or the class section that meets at a time of day that works for you, extra time for tests, etc. I've had PsA since I was a kid, so I'm well familiar with struggling with this disease through the university years. It is incredibly difficult. Hang in there.

Since your hands are awful right now, you can try 2 non-medication things: IMAK arthritis compression gloves (I got mine on Amazon), and a paraffin bath (available on Amazon for cheap, you may find them in the health and beauty section of a drugstore). Tiger Balm is a non-prescription rub that doesn't smell awful.

You may be able to get some steroids or something from your primary provider until you can see the rheumy. If you do that, keep a journal of your symptoms so that if you end up presenting "great" on your appointment day, you still have some data to share with the rheumy.

Forgot to add: yes, I do get that feeling of life on hold when my disease is not doing well. Then everything comes together for awhile and life speeds up again. Then another period of life on hold. This disease is like a roller coaster! FWIW I met my husband in university, and had a 2 years period of bad flares, and we're still together after 20+ years. I think because we met and knew up front what we were dealing with, it made it a bit easier. Your girlfriend sounds like a great complement to you.

Thank you all for being so lovely!

I agree, use the support offered at disabilities services! I started to this year, I don’t always use what they have offered me but it’s really nice to know that I do have the option!

I will definitely get in touch to at least see how they can help , thanks!

Hi, I'm sorry....we all go through these stages. I think it's a process. It's really hard for anyone to accept having to deal with this type of thing. I completely understand and went through the same thing not long ago. I thought my life was over. It felt like the beginning of the end but it's not.

It sounds like this is still pretty new for you. You need to give yourself time to absorb it all. One of the best things is do your own research...the education may help you in acceptance because you will learn more about what's out there. Give it time though...it takes longer than a few weeks to come to grips with it. Stick with your meds and give them some time to work...if you are having a tough time or new problems then bug your Rheumy, speak to your fiancee or speak so someone here if you prefer.

Thanks, its nice to know its ‘normal’. I think dealing with the meds is worse, I just wanna go back to work! But thank you all for the advice, back with more of asmile now :).

What a lot to be dealing with all at once! I think we've all been through the way me phase ... and the what the heck is normal now anyway phase.

Aaaand...my 5 year old is having an existential crisis ... hopefully I'll get back to this discussion later. LOL

Hang on....I know it's aweful. It might be the worst time you have to face when you're trying to find meds that work. Something will help eventually. I suggest you stay on top of the Rheumy and be sure to express all the issues. Make a list.

I think there are stages we all go through with PsA. I was very depressed for a while and everything seemed hopeless. It affects everything..I know. Try to concentrate on new plans and goals. One thing at a time.

In the meantime you have people here you can turn to for support. You are not alone :)