Hi all, I just signed up today and am super excited to get to know all of you. I was diagnosed with PsA in September. I have always had a bad knee so I was used to that but the pain that started in May 2016 was something different. Both of my legs hurt especially my ankles and feet. I could not stand for long periods of time without throbbing pain in my feet. When I would lay down at night my ankles, feet, and calves would just throb. I let it go thinking it was just my knees and lack of exercise plus my weight gain over the past two years. Then sometime in late July my ankles and feet started swelling. I was worried I had some kind of blood clots so I saw my regular doctor who sent me for ultrasounds of each leg. Thankfully they came back okay. She suggested I go to my Orthopedic doctor. I saw him and he did x-rays of both knees. He saw that both of my knees had degenerated since my last visit. I told him about my pain and swelling also. He told me I needed to see a rheumatologist. I went to a new rheumatologist he referred me to. They did blood work, drained the fluid from my knee and then I made a follow up appt. I can’t remember if he started me on the Sulfasalazine then or not. I went back for a follow up and he diagnosed me with PsA and ankylosing spondylitis. He started me on Humira and I was taking the sulfasalazine. My swelling went away pretty quickly and the throbbing pain when standing and when laying down at night has subsided but I still have chronic pain throughout the day especially after sitting for a while. He took me off the sulfasalazine a couple of months ago and we have tried several different anti-inflammatory mess to help with the pain and nothing has worked. The only thing that removes 70% of my pain is Vicodin. He gave me several samples of anti-inflammatories to try before I fill yet another prescription that doesn’t work so that is what I am doing now. I’m just sick of the pain. I am hoping the group can help by getting feedback on treatments that have worked for the chronic pain. It’s just exhausting. I’m 46 and feel a whole lot older!! 
Hi dmd1970! Welcome! It sounds like the Humira is working to some degree but maybe not as well as you would like…
It’s good that some of the pain is gone, but there must be something that can be done about the pain you get from sitting.
Most of us have irreversible pain from damage caused by the PsA, but there are so many ways to alleviate pain–for instance, exercise is almost always helpful. Maybe your rheumy can arrange for some p.t.–I’m wondering if the pain you still have is in your back?
My back is bad and I absolutely can NOT carry anything over about 15 pounds. I can lift my 25 lb. grandsons to put them in their highchair, but carrying them around causes my lower back to hurt and my legs to go numb. There are things you might have to avoid–if you have a sitting job, it’s kind of hard not to sit, but hopefully there are modifications as far as the chairs you use, the cushioning, etc…
I’m sure you will get lots of support and good information from people here who are dealing with similar problems.
Good luck and don’t give up!
Welcome.
It’s so horrible when you sort of realise the chronic pain aspect of this isn’t it? It takes some coming to terms with though and can take some time.
Sometimes just icing and heating works quite well for a bit. Ice for 5 or 10 mins, heat for 5 or 10 mins and repeat for round 40 mins to an hour. I had horrid sciatica type pain in my bum cheek for a while, from my hip. My job is done sitting at a computer. I sat on ice a lot. Then the ice didn’t work quite as well so I sat on heat. Both or either certainly helped lessen that just ‘can’t bear this anymore’ stage. I also changed my chair. Not to an expensive one but just to one that was comfortable for me. That chair remains my go to place always. Especially first thing in the morning.
Some others say a bath in epsom salts works too assuming getting in and out of the bath is OK.
What I found out though was what I thought was simply intolerable a year ago isn’t as intolerable anymore. So despite myself I accomodated it better, if that makes sense.
And exercise of the sort you can manage, swimming, gentle walking really does help.
Have a read all over this site and other people’s stories and you will pick up loads of stuff to try
too.
Oh yes, Poo_therapy mentioned the ice and heat–how could I forget to tell you that??? For a long time I iced my lower back several times a day. Used a heating pad, too, but it seemed the ice helped the most! I also took my ice pack to work many, many times–now only once-in-awhile. I always ice my back for about 10 minutes when I get up in the morning.
It’s unbelievable how well a squishy cold pack can relieve your pain and stiffness!!!
Welcome aboard dmd! I’m going to join in on banging that drum. It can be hard, but getting up and around and moving as you can will help - sitting still tends to make PsA symptoms worse, from what I’ve read and experienced.
It’s kinda of nice that you were diagnosed so quickly from when you started the doctors visits - gives you a much better change of being able to stave off some of the potential damage. The more of that you can stave off, the better you’ll be in the long run - less irreversible pain. Though, there’s always going to be some - even my best days, as a fellow early diagnosed patient, still comes with sharp pains. Nowhere near enough to put me down, but still ever present.
You’re in a bad spot right now, and that can be frustrating, as you’re not just being given a pill that works. Before PsA, if you’re anything like 90% of the population, you went to the doctor when you were sick, got given an antibiotic or similar, and then, hey, you were fine!
PsA doesn’t exactly work that way - it takes time, due to the differences people have within the disease, to find the right mix and types of meds that will really make a difference, and then, unfortunately, it takes more time for them to start making a difference. All of us have been there, and it can be a pretty dark time.
You may want to look into asking your primary care provider to put you on cymbalta or similar. It’s an anti depressant, but it can help with pain and inflammation.
Diet change can make a difference - just don’t look for the first fad diet which says it’ll help for arthritis. Don’t cut out gluten for the heck of it. Just eat healthy - lots of fruit, veg, omega 3, good stuff. Again, exercise, get moving, as hard as it may seem - just don’t overdo it.
It would, but please, be careful about this. I’ve been involved (not personally, but people close to me) to what happens when taking this stuff goes wrong. And when it does, it goes wrong hard.
Thank you for the welcome Grandma_J. I have always had a bad back/neck. I have had surgery on my neck to remove two hearniations and I just had another round of injections in my lower back which worked this time. Hopefully, it will last for a while. My tailbone was the worst during work but I have since switched chairs and it has made a huge difference!!
Thanks again and I am so happy to have support through this long journey!!
Hi Dilorenzo, thank you so much for the welcome!!! This has been tough not getting a quick fix!! I am used to having joint pain as I have the osteoarthritis in my knees plus I have a bad back and neck. This pain just doesn’t go away!!! I understand what you are saying about the Vicoden as I am actually a recovering alcoholic for 5 years now, so I am extremely careful with it and only take it as directed. Plus my doctors know that I am in recovery!! I started weight watchers in February and have been eating quite healthy over the last several months and I don’t see much of a change. Do you know of any supplements (i.e. fish oil or glucosamine, etc.) that have worked? I do not like fish so I am hoping there is a supplement that may replace it. Thanks again!!! Have an amazing weekend!!
Hi Poo_therapy, thank you so much for reaching out!!! I stopped doing the bath thing several months ago when I couldn’t really get myself out of it because of my legs and not enough upper body strength. I kind of just flopped back down in the water and rolled over to push myself up. Funny now but not at the time.
I too am sitting at a computer all day which was just horrible with the tailbone pain I had. I did have them switch my chair a month or two ago and now I have almost no pain in the tailbone area.
Thank you again for your welcome and I look forward to getting to know everybody and expand my knowledge of PsA and what does and does not work for fellow sufferers!!
I take serious high quality fish oil and tumeric capsules. I notice when I don’t take them too. Whether that’s placebo or real I’ve no idea. Green mussel gel is useful too. All from a health food store. Makes me feel like I’m pampering myself sometimes which is useful.
Unfortunately, I don’t take much of anything supplement-wise that I could recommend, as I stick with from the source, but I certainly understand not liking fish (my wife hates the stuff, which is why I mostly eat it for lunch at work).
Finding a supplement high in omega 3 would work, or using flax seed or chia seed on salads or in smoothies may help. Again, it may not - there’s not a whole lot of science backing up diet changes, only personal stories (mine included). It’s not a definite fix, for certain, unfortunately - so little is, except time and trials.