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Living with Psoriatic Arthritis (PsA)

I don't feel that you have PsA. What I believe that you have


#1

Hello to everyone in PsA land. I had joined the group earlier this year when my Rheumy believed that I may have PsA. Well after 8 epidural injections, 3 MRI's, a bone scan, a CT scan, an x-ray, prendizone, flurbuprophine, 2 Humira doses, 3 Remicade infusions, a spine specialist, 2 pain management Dr.'s, a chiropractor, and finally a visit with a Rheumy at the university of Wisconsin in Madison I/we (my awesome family) have a new diagnosis = chronic pain as the result of degeneration Osteoarthritis and CRPS (complex regional pain syndrome). My hand are painful due to the spreading of the CRPS and osteoarthritis at the base of my thumbs and fingers. Neck is painful due to spondylosis and degenerative disks at C5,6+7, right ear pain in due to TMJ, low back pain is due to spondylosis and degenerative disk space as well as ruptured disks putting pressure on the nerves, and SI joint pain due to degenerative, chronic sclerosis spurring. Other than that, I'm in great shape! In all honesty I'm scared as hell about my future. Every morning until bedtime my body is terrorised by pain. I'm fearful of the financial future for my wife and kids. I'm fearful as hell that I may end up in a wheel chair. I hate rolling out of bed pulling myself to my feet, grabbing my 2 canes and slowly stepping my way to the bathroom. I'm tired of having to require a chair in the shower to clean myself. I'm tired of seeing the horror in my children's eyes as I try to move around the house or out in public.

I'm sorry for my rant. I'm sorry that you all have to battle and hurt from PsA. May God help us all!


#2

Hello there and welcome back,

So you have a list of diagnosis at last…I’ve never heard of CRPS, it sounds a nightmare. No wonder they left you unsure for so long what the causes of your pain were, you must have been a tangled web of pain and pain symptoms that were hard to unravel.

Do you have any treatment and pain management plans available for you from your docs? And where do they start?


#3

Another thought…several weeks ago my eldest was taling about a childhood friend he had seen again and how he had always been envious of his friend because of his Father. The reason he was envious?..his Father was always there to offer advice, love, laughter, talk over his fears about life in general, he was envious that the boys Father always had time for his children. The boys father was severly effected by AS and walked with crutches and often had to use a wheelchair, but he was THE constant positive influence for his children when they were growing up.


#4

I have to agree with Louise..do not feel down about yourself. Be thankful you are here for your family. Please do not be ashamed of using a wheelchair. That is the reason they were made so people can get around.


#5

Just know that you are not alone. Even though we do not have the same diagnosis, I have some of the same fears. (except my kids are grown) It takes my income and my husbands to make it. I am so afraid I am going to end up disabled and crippled. I really do not want to spend my whole life on strong pain meds either.


#6

wow it sounds like you have been through a lot of pain! :( I am just at the beginning of being diagnosed with Psoriatic Arthritis!


#7

im beginning to wonder if i even have pa myself. Everything the rheumy has prescribed has been useless at best. I am getting a 2nd opinion to be safe..i wish u nothing but the best....


#8

There was recently a Web cast on the National Psoriasis Foundation.. They explained that not everyone responds to treatments the same. There is also different types of Arthritis and you could have Psoriatic Arthritis along with the other ones.

Here is a link to watch the Web Cast: https://www.psoriasis.org/events/educational/webcasts/managing-symptoms-of-psoriatic-arthritis

driveshaft said:

im beginning to wonder if i even have pa myself. Everything the rheumy has prescribed has been useless at best. I am getting a 2nd opinion to be safe..i wish u nothing but the best....


#9

I actually have a referral to the Mayo Clinic in Minnesota. My GP requested that I have a comprehensive examination starting in the neurological department being the 1st. Every time my phone goes off I pray it's someone from Mayo. So far all that I have is a patient ID.

Pray that you all get answers and some relief of your systems!


#10

I not only have PsA I also have fibromyalgia could it be that is what you have also? A lot of what you described happens to me however I do have PsA and Embrel helped along with gabapentin. Gabapentin to me is like a wonder drug and it is cheap. I did not get it at first and I too felt like nothing the dr. put me on was helping until I got on Gabapentin. It doesn't take away all the pain because I am not on embrel right now, so my PsA is still in full force, but if I forget to take it, it doesn't take long form me to be in full pain. I hate knowing that others have felt the pain that I have felt, but at the same time it is so nice to talk to people who understand. Pain is pain and it doesn't matter if it is from PsA or from something else, it is nice to have others who understand and can be uplifting. I feel so blessed that this sight is out here for people like us. Life can suck but we must make the best of what we have so don't give up and know that your children will love you no matter what.



driveshaft said:

im beginning to wonder if i even have pa myself. Everything the rheumy has prescribed has been useless at best. I am getting a 2nd opinion to be safe..i wish u nothing but the best....


#11

After my monday rhuemy visit and our discussion on the enbrel actually making my condition worse ive been advised to discontinue biologics. He said in his 15yrs of prescribing enbrel he has only had 1 patient to get this bad reaction ..he said my symptoms showed ms characteristics and referred me to a neurologist. I also have a mri scheduled for mon, so maybe just maybe i have something other than pa going on.....


#12

I don’t find it so shocking that Enbrel makes matters worse. My docs say both Enbrel cause flares in 10% of their patients. They also say that it can make some pre existing like MS worse. Humira flared my psoriasis and probably my PsA.

There is a medicine that is just approved for MS that also may work for inflammatory arthritis. There is current a version in the works for psoriasis and PsA.

Google DMF.


#13

I'm sorry about the pain. You're not alone with the doubt, fear and pain of life right now. It's good that you know what you're dealing with now.


#14

I was on Humira for a little over a year and it made me feel a litte sick at first. I think it helped some but it eventually lost it's effectiveness and my dr switched me to Enbrel. I have been on that for about two years now. I still experience pain however. That is an everyday thing with me. I also have fibromyalgia and other health problems that I suspect are tied in with my PsA. Some days I'm in so much pain I just can't function. My dr wants to take me off from Enbrel to see if I will have a change in how I feel. I'm willing to try it, but I also fear what I suspect will happen and that is experiencing even more pain than I do now. This disease has been progressing I think, and I lost my job earlier this year due to being out too often because of pain. Lots of people just don't understand how debilitating being in nearly constant pain is. Just touching my tablet to write this is painful! My tendons ache terrible sometimes. I'm in the process of filing for disability and I have been denied twice now. My next step is court. I hope that my lawyer can help get me approved, I need the help since trying to keep a job is not possible for me anymore. Good luck to all those who like me have this disease. We need it!


#15

I couldn't imagine all of that pain, each day, I am lucky that since I have started my MTX I have been so luck (Knock on Wood) that I have not had a flareup in my Knees, that was painful, and denigrating, to feel like I was such a burden on my loved ones, I had to ask for things that I have never had to ask for before, Like can you bring me a glass of water, or can you bring me a chair to sit on, because I am only 15 feet from the chair, but I can't make it. In closing, especially because this was not meant to be about me, I hope that you remember to enjoy the things in life that make it worth living, look in your family's face and look for the happiness, talk about a time that you had fun, and were all happy, and know that you will have times like that again, but it will be different because you have to deal with pain. PS one additional thing, get your doctor to put you on a low dose of antidepressants, as they have been show to help raise your tolerance to pain. nothing too strong, I know it works, especial for chronic pain, :-) oh and sit in the sun if you can,