First of all, I want to say hi. This is the very first online support group I’ve ever been a part of, so I’m new and learning. So thanks for your patience while I figure this out. But I’ve been suffering from a flare since November and even tho it is improving I’m still not “me” yet. I’m not working, have isolated myself from friends. I had a mental breakdown over the weekend and someone suggested I find a support group, so here I am. I’m interested to learn and hear of others experiences. After 6 months I’m physically, mentally and emotionally exhausted. I need assurance I’m not the only one.
Hello there. This sounds like one long gruelling ordeal you're going through, one that is testing you to the limit. I'm glad you found us, please just post any time you want, you don't need to tone it down or shrug and say 'I'm fine' here.
You are certainly not the only one. I've had my 6 months of hell ... maybe a year or even more, I stopped counting ... but that was back in 2012 /13, before and after getting diagnosed. I sometimes start congratulating myself on getting through that time but then I realise that the real test would be if a similar flare happened again. Back then, hope about what treatment could achieve really carried me through, and indeed I've been lucky so far.
I see from your profile that you've had a right old run around with meds and that is challenging. I wish I had the knowledge to suggest a particular biologic and so on, but I don't. But it does seem as if every time we start a new drug, or even try again with one we've had before, it is day 1 and hope is justified. I understand you're giving Humira another try, and at the time of joining you were just about to take your 3rd injection. How's it going? I'm crossing all my fingers for you.
Of course of course of course, Trishy! You are not the only one. This community is full of people who have had experiences similar to yours, and I should say "unfortunately". And here's the good news: almost all of us got better eventually. Sadly, getting better can take time, but most of us have come to terms with the waxing and waning of our disease. You are far from being the only one!
Here's something else that you might find reassuring: the "mental breakdown" your had on the weekend is quite possibly a symptom of your disease, rather than your inability to handle it. Here's an interesting article. Six months of the pain, fatigue and the many many restrictions which come with PsA are tough to take, but when you realize that the disease itself may also be wreaking havoc with your ability to cope ... yup, double whammy!
So you haven't told us how you got your PsA diagnosis: many of us have sagas of misdiagnoses, doctors without a clue, and diagnostic dead ends. We love hearing other peoples' stories. Do tell!
I so understand what you are going through, I have had for one year & was just feeling this exact same way for the last three weeks. It really has bothering me. Very upset. I catch myself snapping at family. I just keep on fighting to feel better. I think sometimes you have to let it out. It is so frustrating. You are not alone!
Trishy you are definitely not alone. I am a pharmacist living with this and I go through the same things you are. The best thing to do is try to get back doing little bits of what you like to do, that is what really helped me. It was playing sports and I knew it was going to hurt but the comradery and seeing people again outside of my work has been a great help. Do something that works for you and try to reach out to someone who may do something like walk with you. Getting back out in the world will help you as much as any medication.
Reach out to me if you need some specific advice on medication as that is what I do.
Welcome! You are not alone in this. I venture to say that pretty much everyone on this site has been there or maybe is there now. I keep reminding myself that no one said it would be easy. I have had this disease for 30 years so have had more than my share of bad times, but some good times too. I pretty much try to just take one day at a time and put one foot in front of the other. Take advantage of any support groups-live or in line, that you can to help you manage. Best wishes to you for continued improvement.
Hi, first welcome. I’m fairly new here myself. You are not alone in the way you are feeling. No one can really understand what you are going through unless they have. Unfortunately everyone here has in some forms or another. Please don’t be to hard on yourself. Just take it one day at a time. When you wake in the morning, be grateful for the day. You maybe hurting but it’s a new day and you are strong and can work through it. Take baby steps. I have both good and bad days but I push through them. On the bad days I start with little things like getting dressed or making something to eat. You have friends here who care. I will be here for you and I know your pain. You are NOT alone, my new friend. Take care
I agree with all the other comments! You can feel alone and in pain and miserable, but it does pass! You will have good days and hopefully humira will start to help you! When I was first diagnosed and waiting for some relief I used to cry in the shower every morning - the pain was terrible and I was so depressed. Now I still have pain but mostly bearable and I push myself to so the things I enjoy every day - I golf 3-4 times a week - walking 6 miles each round on my painful swollen feet but I am just so happy to be out enjoying life, I don’t care! Hang on in there!
I remember feeling crazy when I was begging anyone to figure out what was wrong with my system. I joined support groups out of desperation to know the symptoms I was having were the same that other people feel. I cannot express what a difference it made for me to hear other stories that although not always easy, at least we can share and find solace together. Welcome to the group, you are no longer alone. Terry
hi Trishy,
welcome to the board. you'll find some great support here. Everyone goes through what you're going through. I know you don't feel like "you" yet, and to be honest, you may never get back to that. (sucks I know) but don't isolate yourself. I'm sure sure your friends would be happy to help support you too :)
Try not to be discouraged. Just educate yourself on current treatments, new research,
I'm sure you and your rheum will find a treatment that helps and works for you--have you tried any of the biologics?
I've tried just about all of them with no change in my condition. I recently started taking the spring valley, triple strength glucosamine and Chrondrioton and that's helping more than the biologics (and is a whole lot safer) it took about 3-5 days before i really noticed a different but OMG it's amazing.
I know you said you don't feel like you anymore, it's an adjustment to being who you are now. We all go through it and it's miserable but once you accept that, things should improve
again welcome to the board. Hopefully you'll find some help here as well. it really is so important to have a few people that understand what you're going through
Hi Trishy,
I'm sorry you have to go through this. I'm sorryfor all of us are having these issues, it's not an easy life. You defintely aren't the only one and I wish we could make this ALL GO AWAY! The best way for me to get through the bad times, is to try and find little things to smile about everyday. Sometimes it's a grandchild's picture, a beautiful flower or even a joke.
Best of luck and I hope you continue to improve.
You’re not alone! PsA sucks but you CAN do this. We are all here to support each other. ((Hugs))
I’ve been in pain for 15 years, first back (spondylitis) then my knees and now my feet. I spend much of my time alone with my dog. It’s not an easy way to live and I’m not gonna sugar coat it. Do your own research and don’t just trust a Dr because their a Dr.Biologicals can work but they can also kill you. Research a good diet, try coconut oil for psoriasis it works pretty good for me. Accept the fact that you have this crappy disease and then move forward the best you can.
You’ve come to the right place. This group helped me through my darkest days, they are the loveliest bunch of people you will ever meet 
we are here for you and feel your pain. We believe how much it hurts and how exhausted you are and how you feel like giving up. We have been there too and know what it’s like to feel like to feel alone and like no one fully understands how hard each day is. We also know how strong a person can be and how you will find strength you never knew you had xox
You’re not alone. I was diagnosed three years ago after almost a year of pain. I couldn’t walk on my own or go to the restroom by myself. It was a dark time. I found a clinical trial that changed my life. I work full time again and struggle everyday to control my emotions. Anger and low self-esteem are a hourly battle. Waking up every morning not knowing if I’ll be able to hold my baby and tell her I love her. We all experience the people that hear arthritis and think “Oh, their hands hurt sometimes. Big deal!”. Hang in there, we are here for you.
Sorry for the rant… This was my first online post as well. Much love, - Cody
Hi Trishy
I'm sorry to hear that you are feeling so low - PsA can get you like that. Be kind to yourself and allow a bit of 'wound licking' . You will find some friends don't understand and never will. However there will be some who do and they are the true ones. I tell my friends that I don't want pity or sympathy just an understanding of what I have. I say that I have to limit what I do according to how PsA is affecting me at the time. It has taken them a while to get the message but most have now. Like some others I find that going some craft work, writing my blog allow me to feel productive and useful when I don't have the energy to go out.
I have been on Humira for about 6 months now - but I only came off prednisilone in March - so it's difficult to work out how it is helping. I still have quite a bit of pain but my fatigue is tons better.
Keep your chin up and imagine like me that you are like the little mermaid who walks with pain to be with her prince - daft I know but quite a romantic notion!
Thank you, everyone. A lot of your replies made me cry. I’ve never had anyone to talk to that “gets it”. I think joining this group is one of the best things I could have done. Thanks again
Hi Trishy, I am sorry to hear you are struggling. It isn't easy to get up and go each day. We are in our winter down here in Australia at the moment and the cold weather has really affected me. I have been trying Vital 3, which is a natural collagen treatment of just three drops per day in water. I have been on it for 6 weeks and I think it has helped. I now can move my index finger a little. It has been locked in place for about 18 months and is very annoying and painful at times. I am also on other meds that my Rheumatologist has prescribed for me. Not sure if they are doing much as my hands still continue to deteriorate. But in saying that, I can still get up and go to work. I try to keep a positive attitude and take rests whenever I need to. I wish you all the best with gentle hugs to you.
Hi,
you are not alone . I was diagnosed thirty years ago and have been on several medications througout the years. One biological worked with me for many years but stopped working about two years ago. Since then I have tried another couple but had to stop due to severe side effects. I am back on methotrexate which was the drug I started with but not without any real success. Steroids injections work best for me but I do know I can’t have them forever and when they wear off I know I will have another flare. I have a very good rheumatologist and was offered to take part in a trial of a new drug. I was then told my rheumatoid factor was too high to take part. I am now waiting to see what else can be offered. The inflammation is for me the most awful part of the disease affecting hands feet and even breast tissue. The fatigue factor is draining so tired and low in mood.All I can say is your are not the only one and this group for me has gone a long way in giving me some comfort in that there are others who feel the same.
Welcome! Hearing and seeing that we are not alone in this is helpful. Many many people on this site have great suggestions.