Hi my name is Kacey and I just found this site and I am very happy that I did. I am 24 yrs old and just diagnosed with PsA a few months ago. I was diagnosed with psoriasis when I was about 11 or 12 and I only had a spot on my elbow and in my ears. The past year my psoriasis has flared up so bad. It’s covering both of my lower legs and on my back, between my breast, in my belly button, and in my ears. Oh and completely covers my scalp. My body had started hurting and I had no clue why. I thought maybe I was over reacting like the pain wasn’t as bad as I thought. My husband kept saying it was bc I slept til noon but I worked second shift and didn’t go to sleep til 3-4 am. I have dreams of being a nurse one day but I feel like that dream may be crushed now bc of my PsA. I just moved to GA from KY in July and when I got down here I went to a dr and told him my body was hurting. He pretty much blew me off and so I decided to discuss it with my dermatologist. She wants to put me on humira but I am 24 and want to start a family so I haven’t started that yet. Lately my body hurts so bad I just want to curl up in a ball and cry. It’s so hard bc I don’t know anyone with PsA and everyone acts like bc I’m 24 I’m either faking or it’s not as bad as I think or like where I work these older lady’s have osteoarthritis and always tell me they know exactly how I feel! But they are 78 and can make it up a flight of stairs where I’m 24 and it takes everything I have. I don’t really know how to cope with this or what I should do to deal. My husband says I will make myself hurt worse by constantly thinking about the pain but hello! How can I not think about the pain? I can hardly sit up in the bed in the mornings. Or get in and out of my car. Or lift my leg to put on a pair of pants. Am I just thinking this is worse then it is? I just feel like no one understands all I have is pity and no support. I’ve gone on long enough for my first post lol thanks for any help or input on how to deal.
Are you on any other meds regarding your PSA? You should go see a Rheumy. Do you swelling in your joints ie fingers etc… I was diagnosed about 5 ago after suffering with psoriasis since childhood. I am know 49. I am taking Celebrex, Methotrexate, and am on a 3 year study for Cimzia here in Canada. I am doing better but the pain and stiffness never goes away completely. I also am diagnosed with Sjogren’s Syndrome and Fibro. So it is possible you are dealing with more than one issue. Either you can never get enough sleep or you can not sleep is a huge issue for me. I wish you luck, but i think you should find a good rheumy. My husband still to this day does not get what i have even though i have been on disability for 3 years now. People just dont get it unless they have been through it. I had to leave work because of the extreme exhaustion, swelling and pain typing, sitting etc…plus i just could not concentrate and was making errors and forgetting things. Everything became and still does become overwelming. I dont know if some of it is from the meds or the disease but it is horrible! There are alot of meds out there so sometimes it takes trying a few before you find one that works for you. But they all come with their side effects. Hope this is helpful and let me know how things are going.
I honesty believe that no one will understand the pain you feel other than another sufferer. I was diagnosed with Psoriasis when I was 11/12 and am now 40, in May 2011 I started to get pain in my hands to start and honestly thought I was using the use of them it was so bad, and then my feet and legs and lower back and other areas started to hurt and swell up. I had been back and ofrwards to my Dr who kept saying to take Nurofen and pharacetimol and it just did nothing I ended up at my Dr one morning in floods of tears and old tem that if nothing was done I was going to call an ambulance, I was finally referred to a rhemi and spent six months just being completely fobbed off by some idiot. Eventually after a lot of fighting I was reffered to Cambridge hospital (I live in the UK ) and they were fantastic, took one look at me and told me I have PSA and it should have been recognised much earlier. I have suffered damage to some joints becasue of that idiot I spent 6 months seeing when I should have started proper medication. I am now on Methtrexate, Sulfasalazine and Enbrel ad although not pain free, I can now live my life
Pleae don`t give up, you know how you feel so keep fighing like I did, you will get there. and like I said you may never be completely pain free but it will beso much better that what you have now
I also have Sjorgens syndrome and Fibromyalgia so like Emma-Livia said you may well be dealing with more than one condition x
Good luck xxx
MrsT said:
I honesty believe that no one will understand the pain you feel other than another sufferer. I was diagnosed with Psoriasis when I was 11/12 and am now 40, in May 2011 I started to get pain in my hands to start and honestly thought I was using the use of them it was so bad, and then my feet and legs and lower back and other areas started to hurt and swell up. I had been back and ofrwards to my Dr who kept saying to take Nurofen and pharacetimol and it just did nothing I ended up at my Dr one morning in floods of tears and old tem that if nothing was done I was going to call an ambulance, I was finally referred to a rhemi and spent six months just being completely fobbed off by some idiot. Eventually after a lot of fighting I was reffered to Cambridge hospital (I live in the UK ) and they were fantastic, took one look at me and told me I have PSA and it should have been recognised much earlier. I have suffered damage to some joints becasue of that idiot I spent 6 months seeing when I should have started proper medication. I am now on Methtrexate, Sulfasalazine and Enbrel ad although not pain free, I can now live my life
Pleae don`t give up, you know how you feel so keep fighing like I did, you will get there. and like I said you may never be completely pain free but it will beso much better that what you have now
Good luck xxx
Hi Kacey - your story is very like mine. I was diagnosed with PSA when i was about 23 after suffering bouts of psoriasis from the age of 11. I am now 33 and pregnant. I was trying for a baby from the age of 26 and my consultant advised that whilst i have the inflammation i will not conceive, i needed to get the symptoms under control. I started the biologic drug Enbrel when i was 31, it really eased things for me. At the start of this year we tried for a baby again and became successful. There's so much i want to say lol! I personally think you need to start a biologic drug, i think Humira is one of them. I realise that these drugs don't work for everyone but for me it has changed my life.
Also another reason that I think others really don`t understand, with me anyway is becasue all results come back normal and outwardly I don`t look ill and they can only ever see it if I am really worn out. So I think that they just think "well she looks fine so what is she going on about "
Like I said the only person who will understand is a fellow sufferer x
I can relate to what you have described. At times in my life I have had other medical issues and I was just told to take motrin..after more investigiation it was discovered that I needed a surgery. Advocate for yourself with your doctor and as others have said see a Rheumatologist. Often in medicine there is over dependence upon "criteria" and if you don't fit perfectly in a box of symptoms then you must be ok. Obviously that doesn't always happen. Many people have a different pattern of their disease and that doesn't make it any less painful or difficult than anyone else's disease. Listen to your body and symptoms and keep looking for the help you need. Hang in there...
Thank you all for the responses. Kelstar- congratulations on the baby! I was hoping to conceive before starting any medications. I have been with my husband six yrs and we have not concieved yet so I have been seeing an OB Gyn about it and were having test done to see why.
I only take Motrin to ease the pain and sometimes it doesn’t even help. They were going to put me on methotrexate but I told them we wanted a baby so they said not to take it.
It all started in my right shoulder an I thought I had hurt my rotator cuff some how and my dr said yes that’s what it was but now my left pointer finger is so swollen I can’t bend it or straighten it completely. My back around my spine hurts so bad. My right side seems to hurt worse then my left like my right knee and right below my butt at the very top of my legs hurt my elbows hurt. Yesterday I was hurting really bad but it was pouring rain so idk if that made it worse. Today I hurt but not like I was.
I am really concerned about if I should continue pursuing nursing or not bc of my pain. I want to work in labor and delivery. I’m also concerned about if I do end up pregnant how will I handle 9 months of pain and then when the baby comes how will I be able to take care of it?
Also i guess it is possible I have fibro. My mother has fibromyalgia and my aunt and grandpa have Ra.
I am thankful I can read your experiences and get advice and comfort from people who have been through this. Last night my husband saw my legs (where I was covered in psoriasis and I’ve been using cream and clearing it up) and he said so does that mean your pain is going away too? I was like ummm no 
I wish it was that simple
Hello Kacey,
I think its really hard for anyone who doesn’t go through this disease to relate to how it feels emotionally or physically, however helpful and caring they are…all we can do is share as much as we can with those that we can rely on to try and understand. There are a lot of medical sites out there with definitions of PsA but you will find you may need to highlight the areas that apply to you and your disease process and leave it for them to read and ask questions about. Only today my eldest son said to me that he really has no way to relate to how I feel, although he’s caring and helpful.
Good luck with all of this and we’re here when you need us x
Hello Kacey,
I'm 40 and was dx with PsA at age 10. I have two children, ages 15 and almost 12.
Most women have a remission during pregnancy, and a severe flare in the few months following.
I can tell you that raising children is hard, even without chronic illness. I have good times and bad times. But I haven't been able to do so many things with my children that other parents do. On the other hand, I've spent about a million hours reading to them snuggled in bed, played tons of board games, and just had a lot of togetherness. They are very compassionate kids.
Because of the PsA I've not been able to work and take care of the kids. I became a stay at home mom. Even then, my spouse has had to do a lot to keep things going. It can be hard if you don't have family / friends to help out. If you do, that would make it much easier.
I'd try a biologic, but lay off the MTX and other meds like that if you are trying to conceive. Get your disease under control, if you can.
Kacey said:
Thank you all for the responses. Kelstar- congratulations on the baby! I was hoping to conceive before starting any medications. I have been with my husband six yrs and we have not concieved yet so I have been seeing an OB Gyn about it and were having test done to see why.
I only take Motrin to ease the pain and sometimes it doesn't even help. They were going to put me on methotrexate but I told them we wanted a baby so they said not to take it.
It all started in my right shoulder an I thought I had hurt my rotator cuff some how and my dr said yes that's what it was but now my left pointer finger is so swollen I can't bend it or straighten it completely. My back around my spine hurts so bad. My right side seems to hurt worse then my left like my right knee and right below my butt at the very top of my legs hurt my elbows hurt. Yesterday I was hurting really bad but it was pouring rain so idk if that made it worse. Today I hurt but not like I was.
I am really concerned about if I should continue pursuing nursing or not bc of my pain. I want to work in labor and delivery. I'm also concerned about if I do end up pregnant how will I handle 9 months of pain and then when the baby comes how will I be able to take care of it?
Also i guess it is possible I have fibro. My mother has fibromyalgia and my aunt and grandpa have Ra.
I am thankful I can read your experiences and get advice and comfort from people who have been through this. Last night my husband saw my legs (where I was covered in psoriasis and I've been using cream and clearing it up) and he said so does that mean your pain is going away too? I was like ummm no :-( I wish it was that simple
Hello. I joined this site yesterday and was diagnosed about 5 weeks ago with PsA. I am still trying to deal with it all. It seems things are under control enough at the moment with my joints and a marks sporadically come out on my body here and there and some on scalp. The rheumatologist has be on naproxen after breakfast and dinner, 4 x 2.5mg tablets of methotrexate once a week, 1 folic acid tablet every day. The dermatologist has me wash my hair/scalp with polytar every morning and put betnovate scalp application on every night after showering, before bed as well as Diavobet ointment before bed on effected areas and Betnovate cream on effected areas in the morning. They all seem to be keeping things ok at the moment. Early days for me yet but things aren't out of control. One thing I did soon after being diagnosed was do a cleansing detox with a company called 'clearer cleanse' (I live in Thailand). I did not eat for 7 days, but drank 6 specially prepared juices that were delivered fresh to me each morning at 6am. I worked for the full week and including the 2 days pre-detox prep I lost 5kg (11lb) in 9 days. The whole time I felt great, not hungry and really great. I also stopped drinking alcohol. As an aussie I have been a BIG beer drinker all my life. I am going to do another cleanse again soon. I hope all this helps a bit.
Hey there fellow Georgia girl! I am 34, and I have been aching since August. Two different docs offered an antidepressant. I was furious! Finally saw a Rhuematologist in December. I know what you are going through, and I am so glad you have found this place of support. God bless you! You will be a nurse, if that is the desire of your heart! "For God knows the plans He has for you, they are to bless you and prosper you, not harm you." Jeremiah 29:11-14
Hi Kacey,aww you poor thing, I know how difficult it is esp when others don't understand our disease, it is so painful and yes sometimes just lifting your leg causes you to cry out, or you just can't without help, I don't know how many times I found my self stuck in the shower, and my husb has to help lift my legs for me to help me get out, this is a REAL disease with REAL pain, so please see a Rheumy doc soon, there is relief for this for you. Of course the flares will come and go and you'll have to adjust meds when that happens but at least you can have a better quality of life instead of living in so much pain. I too was diagnosed at the age of 24, severe pain in my hip is where it started and also in my fingers/hands. I am now 50 and have lived with what you describe all of my life. With this has also brought on, degenerative disc disease, IBS and fibromyalgia amongst a few other things. So you do need to take this seriously and find some relief for yourself, we all know what you are going through and believe me NOTHING is in your head, People do not understand, they try but dont' get it that one day you can't sit up without crying and needing help and in a week or so you can. PsA comes and goes with flares but untreated will keep you in a lot of pain. Remember if your wanting to start a family you have to be off any of these meds for 6mths before conceiving. I feel for you so much about the nursing choice, as I was in college for a nursing degree when this hit me and hit me hard, I realized I couldn't go on with my career choice as my strength was taken from me esp at that time in my hands/hips, how could I lift a patient etc. But other things will come along that you are meant to do so don't let that get the best of you, it simply means there is something better for you to do. My psoriasis is mostly in my scalp it gets thick and itches and bleeds and hurts! I didnt' realize it would hurt so much, i thought it would feel more like dandruff just a nuisance. In the 26 yrs of having PsA, I, in the past 5 years now actually am bothered by the psoriasis too. I know so many people tell me to stay active and move, walk etc, but I just cannot, when I do work out I flare, ad I flare bad. I know everyone is different, I used to be able to exercise and feel the benefits of it but now it seems it only makes things worse. I hate to hear your in so much pain and doc's are not taking you seriously, you reallly do need to see a Rheumatolagist (spelling? lol)
I have been a nurse for 5 years. I started out in the ER, and when I wanted to start Humira for psoriasis, I felt I needed to get out of the “dirty” environment. I now work at an outpatient surgery center as a preoperative screening nurse. There are SO many different options in nursing that you can still do with PsA. I am working with my supervisors to get my office moved into my home to help accommodate my disability.
It doesn’t sound like your disease is even remotely well managed at this time. That should be your first priority. Then look at a nursing program. Personally, I think it would be too much to manage little ones, PsA AND nursing school. I went to nursing school with an infant, and felt like I didn’t see him until he was 2! Also, at that time, I was not dealing with PsA.
I think that everything seems so overwhelming when you try to take on too many things. And these are big things! Get yourself with a good rheumatologist and try to take it from there. You do need better med mangement that just ibuprofen.
My daughter was diagnosed a year ago and is 21. I can relate to everything you are saying on your first blog. She is back home for the support - not working - depressed - in pain. She does not want to go on the hectic drugs, since MTX made her hair fall out and the others upset her stomach so badly. I am seeing from this site that the biologics wear off and doctors just go from one thing to the next trying to ease the pain and stop the progression of the disease. I wish I had some grand advice....but I also see that Lauren wakes up at noon or later and doesn't start feeling like she has energy until about 3:00-4:00. She can stay out (and used to work) until 2:00 in the morning - the cycle starts again.
She goes to the doctor next week and I am sure he will have another idea for a cocktail of meds that could work. Right now, it is just ibuprofen and prozac. Lauren's jaw is still very sore - so I am sure he will go up the ladder of meds this next time around.
Keep the faith that you are young and there have been a lot of advancements in recent years - something's got to be on the horizon - that's what I am praying for......a cure.
Lol, the best thing about pregnancy was the remission! but the flares afterwards, wow.
Your story is very similar to mine too. I got psoriasis around 12/13 and PsA in my twenties. I was always told I was too young to have arthritis so it was always bursitis, tendonitis, plantar fascitis, etc. I finally got diagnosed in my mid-thirties and started DMARDS. I reacted to them and I got scared to move onto the biologics so I tried the natural route. Best (and hardest) thing I have ever done! I have no pain at all, virtually no inflammation, no psoriasis lesions. Try a strict elimination diet (there are plenty on the web and the stricter the better unfortunately) but you will see results in four days and crazy results in ten. I won't lie and say it's easy and no big deal because it took me two years to get to where I am. Always cheating, giving up, starting over but now I think it's an official lifestyle change and can't be happier for it. BTW, when I started the diet, I couldn't sit for more than 15 minutes before my legs seized up in pain, couldn't turn a doorknob with one hand, couldn't lift a plate with one hand, could not stand barefoot, couldn't close my hands, my skin felt like I had the flu (if my arm hair bristled, it hurt my skin, if that makes sense) . I hope you try it. I hope many will try as it has been a lifesaver for me and am just putting it out there if someone else wants to try and it helps. BTW, my triggers are sulfites (including toiletries), gluten, dairy, grapefruit, peanuts, chicken, and high carbs. It's not so bad - really.
Hi everyone. Thanks for all the replies. I have been really busy the last couple weeks so I haven’t been on here to reply. I am so glad to hear that someone is a nurse while living with PsA. I have started humira. About 3 weeks ago. I took my first dose of two shots then a week later took one shot and my next shot is next week. I felt relief pretty quick from the humira. My swelling in my fingers has went down tremendously and I haven’t had any arthritis pain at all. I have been feeling like I’m getting a cold. Everyone around me has been sick so I think I’m getting it especially since I am on humira. I have a check up appt with my dr on feb 14 to see how the humira is helping. My psoriasis has not cleared up yet. I did have some abdominal pain the first week after starting it but none since. I also have started classes to get into the nursing program. And I have decided to wait to have kids til I have a career going. I hope humira continues to help me for a long time bc I haven’t felt this good in a yr or so.
Hi Kacey my name is Jill :) Im sorry your in so much pain and I wish there was a magic pill for all of us to make it go away.....I hope you will turn to this site as additional support when ever you need. Are you on any meds yet for the PsA? Has your doctor discussed all the treatment options? I get the same response from people when I tell them I have PsA....."ohh ive had arthritis for years" like its no big deal. They just are uneducated thats all. And when it comes to the treatments--well, you definately need to read all the risks and benefits. I had to read about PsA to my husband about 4 times before he finally "GOT" it. Then I had to discuss the possible side effects of treatment and how that would impact our lives. Ive been on Methotrexate now for 10 months and i hate it...but its a necessary evil. I stopped taking it recently because I was fed up and wanting my old life back. Silly me-10 days later I was in a full on huge flare up that made my skin itch like mad and my joints swell and hurt. Needless to say Im right back on it again and waiting for it all to go away--scratch scratch, lol....Its great to meet a new friend and I hope to talk to you again real soon. Hugs :)