I need some serious help and encouragement. Here is my background. Experienced pain about 9 mos ago in hand and assumed it was PsA as I have psoriasis. Have been trying different NSAIDs without much luck. Blood tests and X-rays all negative for PsA. Had MRI last week that showed some corrosion to one of my finger joints and now I am starting on methotrexate. I am devastated and very depressed. I am no stranger to medical conditions. Diagnosed with type 1 diabetes at age 18 and then psoriasis shortly after. I am 36 now. Managed to finally come to terms with all of that. Then, in 2008, I lost my first baby two weeks after he was born. Picked myself back up again and had two more children who are my life. They are 1.5 and 3.5. Finally started feeling “good” again about life and even started running, which I never liked but began to love. Bam! Joint pain. At this point I have dug myself into a deep pity hole that I cannot get out of. This latest “life setback” has thrown me into a deep depression and constant crying. I cannot believe what I have already gone thru in life and now this. I feel like I’ve got one foot in the grave. Granted, I know that that is not the case but I can’t get my head cleared. All I can think about is my little kids, and not being able to be around for them. I have lost all desire to exercise or do really anything to improve myself as my attitude is " what’s the point?" I need some encouragement/ ideas to pull me out of this and some positive stories to make me feel better about all of this. Sorry so long, thanks
Melissa
Welcome to the group Melissa! I think you already know the point of treating yourself, exercising, etc. Your two young kids are your reason.
It's not unusual to be depressed and have a hard time coming to terms with a new diagnosis, and your diabetes diagnosis was right when you first became independent. When I was diagnosed, I was your age, with an almost 1 yr old, and a 5 yr old. Keeping moving is helpful, and will keep you strong. I have continued to run intermittently, even through some pretty intense flares. As long as it was just painful at the beginning of moving, it was not a good reason for me to not be moving. Truthfully, I had my major pity party and episode of depression when I was 25 years old and had back surgery, which left me in chronic pain and unable to properly walk. After a second surgery and a lot of work, I was able to come back from it.
I look at my mom now, who is 68yrs old, has had multiple back surgeries as well as major nerve damage to one leg, diabetic neuropathy (Type 1 since 30 yrs old), and severe osteoarthritis, as well as many soft tissue issues. She is still out doing field training with her dogs, even with a walker. She has pain all of the time, but she continues to exercise and keep active. I don't know how she does it, but I'm impressed.
If need be, seek treatment for depression. Even if it is just needed to get you through this period, that's fine. There is no shame in getting treatment, and you'll be more of the mom and person that you want to be again. Wishing you the best.
Sharon
Melissa, don't panic. You've just begun to fight. The MTX probably won't work, but it might! If/when it doesn't work, your doctor can put you on Enbrel or Humira. One of those most likely will work.
If they don't work, your doctor may try Remicaide. Remicaide can be very powerful, partly because your doctor can push the dose up pretty high.
If that doesn't work, there's Stelara and the RA drug Orencia, as well as other options I'm not aware of.
You have long way before you have to accept anything. Right now it's time to fight.
When my PsA flared just before I was diagnosed, I couldn't sleep my knee was so swollen.I'd compress it and put ice on it. I'd sleep until the ice warmed up, that's it.
Within 3 months of being treated, steroid shot, MTX and Enbrel I was 100%. There's some very good drugs to treat what you have.
You can likely go on Enbrel after 4 weeks on MTX.
There are no specific tests available that will confirm a diagnoses of PSA and just because your tests have shown a negative result does not necessarily rule out PSA. Often in the early stages nothing will show on the X Rays, this is fairly common amongst PSA. Blood tests vary from person to person on what may show up or not.
Was this information from a Rhuematologist? What were you told was the reason for the erosion in your finger joint as that is what happens with PSA, or is it due to something else? Perhaps you were too taken back just trying to take in your results and remember them. Thats what use to happen to me in the begining. I quickly learned to research it myself and to write a list of questions for my next visit.
If you are suffering from depression that is also common amongst PSA patients. Depression is something that needs to be treated and the quicker you do that the better off you will be, your doctor can help and if you combine this with counselling/therapy that would be a good start to get you to be able to cope better. Plenty of old posts to read.
There are plenty of gentle exercises that you can do to help keep yourself as mobile as possible. Go to a heated pool and exercise. See a Physio Therapist. I was given a set of exercises to do sitting on a chair.
Try to remember what you did and how you overcome those tough times before and maybe if you can use what you did then and perhaps you could use this now.
Your children need their mother and you need to do whatever it takes to get yourself into better shape to cope with small children.
Life can improve and now is not the time to give up before you have even given Mtx a chance to work. As far as the NSAID you might find that your worse without them. Are you taking Folic Acid with Mtx as this will help with some of the side effects if that is a problem and it will also help with depression if not talk to your doctor. You don't take it on your Mtx day.
It is so important to eat well and sleep well at night as this helps with depression and general well being. I wish you well.
you came to the right place.
Thank u very much for your reply. I greatly appreciate it.
Stoney said:
Welcome to the group Melissa! I think you already know the point of treating yourself, exercising, etc. Your two young kids are your reason.
It’s not unusual to be depressed and have a hard time coming to terms with a new diagnosis, and your diabetes diagnosis was right when you first became independent. When I was diagnosed, I was your age, with an almost 1 yr old, and a 5 yr old. Keeping moving is helpful, and will keep you strong. I have continued to run intermittently, even through some pretty intense flares. As long as it was just painful at the beginning of moving, it was not a good reason for me to not be moving. Truthfully, I had my major pity party and episode of depression when I was 25 years old and had back surgery, which left me in chronic pain and unable to properly walk. After a second surgery and a lot of work, I was able to come back from it.
I look at my mom now, who is 68yrs old, has had multiple back surgeries as well as major nerve damage to one leg, diabetic neuropathy (Type 1 since 30 yrs old), and severe osteoarthritis, as well as many soft tissue issues. She is still out doing field training with her dogs, even with a walker. She has pain all of the time, but she continues to exercise and keep active. I don’t know how she does it, but I’m impressed.
If need be, seek treatment for depression. Even if it is just needed to get you through this period, that’s fine. There is no shame in getting treatment, and you’ll be more of the mom and person that you want to be again. Wishing you the best.
Sharon
Thank you for your reply Andrew. The other part of my story is that I apparent,y have been exposed to TB so going on a biological right now is not an option but it looks like my doc is sending me to an infectious disease doc and hopefully they will put me on the meds. So I guess I would have to wait the 6-9 months for those meds to clear that issue up!
Andrew said:
Melissa, don’t panic. You’ve just begun to fight. The MTX probably won’t work, but it might! If/when it doesn’t work, your doctor can put you on Enbrel or Humira. One of those most likely will work.
If they don’t work, your doctor may try Remicaide. Remicaide can be very powerful, partly because your doctor can push the dose up pretty high.
If that doesn’t work, there’s Stelara and the RA drug Orencia, as well as other options I’m not aware of.
You have long way before you have to accept anything. Right now it’s time to fight.
When my PsA flared just before I was diagnosed, I couldn’t sleep my knee was so swollen.I’d compress it and put ice on it. I’d sleep until the ice warmed up, that’s it.
Within 3 months of being treated, steroid shot, MTX and Enbrel I was 100%. There’s some very good drugs to treat what you have.
You can likely go on Enbrel after 4 weeks on MTX.
Hi Mellisa, welcome to the forum ! This is a great place to find support, get educated on PsA and find helpful tips.
I haven't read all the responses so I don't know if this was said already, exercising will make you feel so much better , mentally and physically if you can do it - exercise is proven to help with depression. Many people with PsA take an anti-depressant, you may want to discuss that with your doctor. You can look up discussion on this forum about depression in the search box at the top of the page - you may find it useful.
Frances
Hugs, Melissa! It takes time to come to an acceptance of living with psoriatic arthritis. It's easier and faster for some than for others. You might find it helpful to find an outlet for your worry, your fears, your anger, your sadness ... this is a good place to unload all of that. I found blogging to be a good way to process my diagnosis and to, as I write each post, find a new perspective on life with PsA. (My blog is rannygahoots.blogspot.com , if you're interested.)
My journey with PsA thus far (lived with it for most of my life, finally got a diagnosis at age thirty-six) has been an interesting one. I went from being a fairly active person (hiking 7 miles through Connecticut hills) to using canes or a wheelchair in a matter of months. My PsA is so aggressive I had damage visible via x-ray upon diagnosis that got worse via x-ray in a few months. I was put on Enbrel, which partially worked, and am now on Remicade, which is working wonders. My mobility devices are all stored away in case I need them, which I haven't in months. It's been a rollercoaster, and we've uncovered other health issues along the way, but all in all, my PsA diagnosis and learning to live with PsA have been huge blessings in my life.
I wish you well on your PsA journey. Getting treatment for depression can go a long way in helping you feel PHYSICALLY better.
Hi Melissa. We are all here for you if you need us. Sometimes it helps to have people to talk to who are in a similar position as you so we understand I also have two children and worry about how I am going to look after them or feel sad because I cannot join in on activities or days out with them but you have to pull out the positives from the negatives like the children and you have got to fight back there will be some treatment that will work for you it just takes a bit of time to find the right one. Big hugs Catherine
Hi Melissa, just checking in to see how you're doing. Wishing you the best, Frances
Thank you Catherine. It’s nice to know I am not alone in this!
Catherine said:
Hi Melissa. We are all here for you if you need us. Sometimes it helps to have people to talk to who are in a similar position as you so we understand I also have two children and worry about how I am going to look after them or feel sad because I cannot join in on activities or days out with them but you have to pull out the positives from the negatives like the children and you have got to fight back there will be some treatment that will work for you it just takes a bit of time to find the right one. Big hugs Catherine
Hi France’s. thanks for checking in. I am post Mtx day so feeling tired but at least am having a few days where my head is above the water! Thanks for checking in
Frances said:
Hi Melissa, just checking in to see how you’re doing. Wishing you the best, Frances
Thanks Nym. I will have to check out your blog. I am sorry that you are having to go thru all of this as well
nym said:
Hugs, Melissa! It takes time to come to an acceptance of living with psoriatic arthritis. It’s easier and faster for some than for others. You might find it helpful to find an outlet for your worry, your fears, your anger, your sadness … this is a good place to unload all of that. I found blogging to be a good way to process my diagnosis and to, as I write each post, find a new perspective on life with PsA. (My blog is rannygahoots.blogspot.com , if you’re interested.)
My journey with PsA thus far (lived with it for most of my life, finally got a diagnosis at age thirty-six) has been an interesting one. I went from being a fairly active person (hiking 7 miles through Connecticut hills) to using canes or a wheelchair in a matter of months. My PsA is so aggressive I had damage visible via x-ray upon diagnosis that got worse via x-ray in a few months. I was put on Enbrel, which partially worked, and am now on Remicade, which is working wonders. My mobility devices are all stored away in case I need them, which I haven’t in months. It’s been a rollercoaster, and we’ve uncovered other health issues along the way, but all in all, my PsA diagnosis and learning to live with PsA have been huge blessings in my life.
I wish you well on your PsA journey. Getting treatment for depression can go a long way in helping you feel PHYSICALLY better.