I'm a 37 year old man. I was hurt at work in may of 2011. I fell and landed on my back on some broken wood. I have disk herniation and degeneration as well as nerve damage in my back and right leg. I received very poor treatment from workers comp. in a years time I had a few weeks of physical therapy and two epidural shots in my back. I have been in constant pain. In June of 2012 I started to develop dry skin on my face and head. This quickly turned into large psoriasis patches covering 40% of my head. It's also in my ears, genitals, and face. In August my fingers on both hands swelled to three times their normal size and became extremely painful, hyper sensitive, and became unable to bend. My family doctor diagnosed me with PSA and told me it was caused by the constant pain and stress my body has been under. Workers comp wouldn't pay for a rheumatologist. My doctor gave me to regiments of prednisone. To gets the swelling down and buy me time. I've been on tromodol for my back pain so he continued that. The pain and swelling subsided slightly but within a month my knees, feet, and toes became as tender and swollen as my hands. I also had thigh pain that caused me to lose the ability to stand on my own. My doctor now has me on meloxicam that has reduced the swelling a bit and has eased the pain in my thighs. He also put me on amitriptyline for depression, to help me sleep, and for the pain relieving effect. I have fought workers comp and just had a court date to compel them to have me treated be a rheumatologist. I'm in agony, I'm depressed, I was just married in February and my poor wife has become the breadwinner and my caretaker. I need help, no one understands what I'm going through. I'm desperate for advise and understanding, I don't know how much longer I can do this on my own.
Marcmann I am so sorry this is happening to you. I am sending warm hugs and prayers to you. Perhaps what you need to try is applying for social security. I think maybe the problem you are running into with workman's comp is that the psoriatic arthritis was all ready in your body the stress and pain made it pop out now but probably would have popped out later anyway. They never pay for Rheumatologists because the problems rheumys treat are not problems caused by accidents at work but by auto immune disorders. Just a thought for what it's worth. I wish you all the best and will continue with a prayer.
Thank you for your kind words. I'm currently going through the process of filing for SSI disability. Luckily I was able to dig up some studies linking trauma to inflammatory arthritis. The main of which was written for workplace safety and the insurance appeals tribunal. Luckily the judge agreed and now workers comp had to not only pay for my care I also got to chose my rheumatologist. I've been in a constant state of flare since the onset. I had no idea that you could go to bed fine and wake up crippled. My entire situation has been a nightmare. My company fired me when I got hurt and even cancelled my insurance without informing me. I burned through my savings and I've been fighting with unemployment for almost six months. Now I'm in the process of trying to get disability. My saving grace is my family doctor that has been seeing me at no charge. I've been doing research on PSA but there is so much conflicting information I don't know what to do. My fingers have been swollen and tender from day one all except my thumbs. I can't close my hands at all. It spreads to my feet, toes, knees, back, and the worst besides my hands has been my thighs. I've been told that its the joints that are inflamed but it feels as though its the muscle. The exhaustion is something else I've been dealing with. Most days I can't even get off the couch. I feel so alone in this, I can't even think about it lasting forever. I have three dogs that I've rescued and I can't even walk them anymore. My wife has been doing everything. To top it all of we live in toms river nj and our house took a hit in Sandy a few weeks back. Where I could have easily fixed things in the past, now I can't even hold a drill. I don't even feel like a man anymore. I've gone from a hard working man that provided for his family to a useless burden. I just want my life back.
Oh I am so sorry for your troubles Marcmann. You really been through the ringer. Just remember, as I have to remind myself, partners in marriage have made a vow to help each other in sickness. Not that I wish my husband trouble but if he ever needs it I hope to take as good care of him as he takes of me. Some times it truly is more blessed to give than to receive.
Been there man. I’m 31 and got diagnosed earlier this year. My wife has since become the primary breadwinner as well while I get back on my feet with the help of a whole bunch of meds. She hates seeing me in pain but doesn’t object to being the one I have to lean on. It does annoy her a bit when I complain about how “It’s not supposed to be this way” lol. Have patience, pray, find the good in the situation (or at least the humor) and feel free to lean on us here. I haven’t been on the forum much since I started doing a little better but it was a great help to me when I was at the worst. The people here get it. We understand what it’s like to look completely healthy and feel like you’re falling apart and dying on the inside. Good luck. I’ll be praying for you.
I am glad you are now turning a corner...in the early days I often asked my consultant to amputate my toes or fingers as I could not stand the pain, but through time and finding the right medication for me I can almost laugh at my requests (although not so much on a bad day). What I will say is that in my experience big adjustments have to be made, but these are done to suit what your body can take. Living with/in your new body takes time and acceptance. I do what I can when I can, at my worst I come on here and see I am not alone and that it intself (for me) is food for the soul. So please keep your chin up and feel free to vent on here because we are kindred spitits my friend...good luck and be pain free soon
Hi Marc! Welcome to the group.
I myself have only joined recently and have found this group to be very helpful already!
Your story just had me in tears, but I must assure you, you are not alone and you will get through this if you want to.
I have had PsA for 15 years but only this year-2 months after I myself got married- did the disease become so active I lost my career and the ability to do much of anything aside from reading and watching TV. Like your wife, my husband became the sole breadwinner, and living in a city like London England, we can barely make ends meet even though he has a decent salary. It has been a struggle for us, especially in light of the fact that the first year of marriage is supposed to be the 'honeymoon' phase, the time when everyone wants to know 'so whats it like being married you two lovebirds?'. It has definitely been hard, emotionally even more than physically... I have been housebound for much of this year, and trying to keep positive in the face of failed medications and continuous relapses in flare ups, has been difficult but absolutely necessary. As I'm sure your wife knows, it is extremely difficult to work all day, and then come home to a sick spouse that needs food, care and hugs. Your job, is to stay positive no matter how hard it may seem...She needs to see you laugh and she needs to know that you believe there is a light at the end of the tunnel... and there is! Things will get better! They may get worse first, but they will get better... and if she can be strong enough to stick by you... you will have the most amazing sort of relationship when you finally get your health back. My husband and I are more in love than ever and I trust him beyond any doubt. For a couple who have been married only a year... we know more about each other and have gone through more hardship and tears in our relationship than most people will go through during 30/40 years of marriage. At 29 years old in London we should spend our weekends out enjoying the city with friends at the pub, football match, museum or gig...but we have now adjusted to a life of staying in, board games and quiet hobbies. You have to be able to adjust, otherwise you will constantly bemoan the loss of your formerly active life and spend too much time frowning.
The hardest part for me has been losing my independence and confidence. I was always a 'career' driven person who thought my job was my life and who valued my ability to get on in any difficult situation. I had traveled by myself, had lived abroad, had never doubted my own abilities to handle tough situations...when your body doesn't work... all that goes down the tubes! I am now afraid of walking in my neighborhood at night because I know how vulnerable I am not being able to run if need be! This is not me! My husband always admired my fearless attitude towards life and found it quite difficult to see me so weak and helpless. Who I am, changed for him...which was hard for both of us. But he still thinks I am strong, because the strength involved in withstanding this disease is something that you can't take for granted. You are still strong and you can still take care of your wife in different ways. Just make sure to smile and laugh through the pain, this will make a huge difference to her!
I wish you and your wife the best of luck. Stay strong!
Wow, I know just how you feel when you said you went to bed as a normal person and woke up crippled. That's exactly what happened to me. And it felt like muscles, not joints as well and I went through 2 Rhuemy's to get the right diagnosis. I am now on Humira (after trying Enbrel) and Methotrexate. It took a long time to wean off the prednisone but I was able to about 4 months ago (after 2 years). I also take Lyrica for nerve pain. The combination of the three drugs is working for me for the most part.
Something else just found out by taking a saliva test (my Chiropractor ordered it) is that I am intolerant to dairy, soy, and especially wheat gluten! I have stopped eating anything with gluten or dairy in it but finding things without even a little soy is pretty hard without making everything in your kitchen from scratch! My shoulders, that always seem to remain a little stiff, feel better! A lot of people were telling me to get off gluten but until I had that test, I wouldn't have believed it - just something else to think about...
Once you get into see the Rheumy, you should be on your way to the right treatment and will feel better.
You all are amazing. I am reading your blogs and see that although you may not have the physical strength, you have the emotional strength and are using that to build up one another. Keep the faith - and one day......may their be a "cure" for this disease. Thanks for your insight - it helps me to have empathy for my daughter. I think sometimes that "outsiders" need to read some of these conversations - this is the only way you really "know" the disease. Thanks for sharing. It helps me to prepare for Lauren and what could possibly lie ahead. She still won't even get on this blog - still a little in denial and at 21, who wouldn't be?
Some communities have University Medical Center Clinics for Rhuematology that are free or income based. In my area, the University of Cincinnati has one in a local hospital. Maybe you can look online for one near you.
I was diagnosed in October. I have finally decided to take Enbrel. It really scares me to do it, mainly because I dont know what I expect the drug to do for me. But, you know what - I am tired of being afraid. Someone told me - "Don't be afraid to be afraid".... and that really made sense to me. it is ok to be afraid - that is part of the process - I think... I will take the steps I need to conquer this disease. I have probably had this disease for a few years now - and didnt realize it..I had a rheumatologist suggest that I take Enbrel then... but she wasn't sure if it was PsA. Without a distinct diagnosis - I decided then not to do it. I have seen only gradual changes in my skin.. most of my concern these last couple years - was nail changes - I thought it was only a fungus - but when it was only on my two big toes.. but then I saw ridges on my fingernails - then I decided to find a rheumatologist near my home. My first visit to a new rheumatologist - he diagnosed me with PsA immediately. He said that my case intrigued him.... he said he does not take all patients that are referred to him. At first I thought, what is soooo wrong with me.... but then I thought - this Dr. is going to take more time with me than any Dr. I have seen before.
The best advice I can give you at this time is.. take one day at a time... take time to make choices, ask many questions as to your care.. because you are the only one that knows how you feel..
Take care and god bless.
My life changed one September morning when I woke up. No previous warning, it came quietly and by surprise. It is hard to accept the facts, but our happiness depends on it.
We can modify our lifestyle, be happy, and still enjoy life. There is a beautiful world out there to conquer. I conquer it at my own pace. Defeat is in the mind, not the body; and we can always find someone in worse condition than we are.
These thoughts help me cope on bad days. Great blog, AnnaW.
so sorry you are going through this. I am heartened to see a judge backed your claim and your doctor is seei ng you free of charge.:) Things will get better. Things will improve.Unfortunately it does not seem to happen as fast as we would like.
I am surprised whenever I see the words"I woke up one day and life changed"for that is how I think and feel too.
You are never alone . We are all here and know exactly what you are talking about.
Hi there and welcome,
We understand, we all struggle with the loss of our former selves…its a grief process that we all go through at different rates. Hang in there, usually things do get better. I still find it har to accept I’m not wonder woman anymore!
There is a part of PsA which involves the tendons and ligaments called enthesitis, this is where the tendon/ligaments get inflammed where they join the bone, I’ve heard of some people on here who explain that the feelings of this inflammation can extend further down the limb from the joint…could this explain the thigh pain?
I primarily suffer from enthesitis and can’t believe the extent of the pain sometimes.
I’ve found that humour is my way of coping, I try to see the funny side of most things even when I have a melt down and cry my eyes out (I’m menopausal as well!) My sons and boyfriend don’t always understand but just pitch in and help or make me laugh
Good luck with your treatments, and we’re here to lend an ear if you need to off load
I don't even know where to start. I felt so alone in this that its choking me up to read all of your messages. I can't thank you all enough for your support and advise. You make me feel hopeful.
The Mobic my doctor has me on has been keeping the inflammation down. My fingers are still a bit swollen and tender but I've regained the ability to use them somewhat. The pain in my thighs has eased so I can finally stand on my own again. My left knee is totally shot and I have to wear a brace on it at all times. My feet ache and my toes have been swelling slightly and I just noticed last night that the nails are starting to lift. The exhaustion won't let up. I'm only able to stay awake in the evenings because one the tromodol, it wakes me up as opposed to causing drowseyness. The stress and depression has been better with the help of the amitriptyline. I hate to use antidepressants but I have to admit it works, I still feel like myself but I can't seem to feel stressed or angry. My psoriasis has gotten worse. It's now covering about half of my scalp. If anyone's had success with a treatment for that it would be very welcome.
I think Karen made a really good point a about outsiders reading these forums. My wife was in tears but it also helped her to see the struggle and the hope.
Louise, that's exactly what my doctor feels it is. Of all the symptoms besides my hands the enthesitis is the most crippling. Just standing up from a seated position is a nightmare, stairs have become my worst enemy. Ive beeg going the humor route. I can't tell you how many stand up comedians I've watched on netflix lately.
Marcmann- I have a prescription for clobetasol foam for my scalp that works well. It melts easily at skin temp. So I foam it out onto the edge of our sink. The directions say to use a plate but I don't like plates in the BR! Wash hands well after applying as it is a strong steroid. I also rely on humor, though it's hard to remember that as I have been in a flare since August! I also have thigh and forearm pain, love that enthesitis! Tough to be a stand up comic when you can't stand up, eh! Maybe we will all be lie down comics!
Oh Marcmann. Such a tough time for you. I wish you patience and strength.
I have the clobetasol liquid (solution) for my scalp psoriasis. I had a really bad psoriasis flare after going on methotrexate and prednisone for PSA--the flare was likely caused by an initial attempt of tapering off prednisone--and the cobetasol was a great help calming things down. I hate that I'm taking steroid on top of steroid but quality of life is important.
Anyway while this isn't medicine, a 50/50 mix of glycerin and witch hazel makes a really good temporary itch-relief solution. Apply it to all the affected parts. The witch hazel is a natural anti-inflammatory and the glycerin moisturizes really well. Most witch hazel has alcohol in it so is a bit astringent unless you can locate the alcohol-free kind. Maybe I'm odd, but when I'm itchy I like the sting. It goes away after a couple of seconds. I do suppose you should be careful precisely where you slather it given your list of affected areas. To keep my scalp calm I find rotating through 4 different shampoos helps: coal tar, salicylic acid, pyrithicone zinc and selenium sulfide. These are the four active ingredients you find in anti-dandruff shampoos. I try to use something different each time I shampoo which seems to help keep my symptoms a little more controlled. I use the store brands to save money. Last flare responded really well to the Target brand T-gel copy.
Word to the wise about making the glycerin mix: I recycled an old clobetasol solution bottle for my mixture as it has a tiny nozzle for applying the solution through your hair to your scalp--that way you get it where it needs to go and you don't look like a greaser!. Please don't make my mistake. Label the darned bottle! I wasted perfectly good time one morning showering and drying my hair after putting on the clobetasol (which dries like water) only to find that I kind of resembled Hitler on a bad hair day because I had infused my locks with the glycerin mix not the prescription. Not a good look and I had to re-shampoo my already tender head.
Keep us posted on how you're feeling. And it is totally fine to say you're feeling crappy!
Just an FYI to everyone... on to what helps me... it was like the best wonder drug ever.. to do with the Psoriasis on my scalp..
It is called Olux... im sure it is a steroid.. so be careful where you use it. I only have to apply it once every 4- 6 mos... it is that good.. i tried using a generic for a while.. because of the insurance company... but it did not work... it is very expensive if you do not have insurance... it is like over $400.. for 3 oz... it comes out in a foam... but it will last you probably 3-4 years. So when anyone sees their dr. ask them about this... I think it was prescribed by my dermatologist...