Hello, I feel fortunate to have found you all and this is my story. I have read through here and realize we are all different. Being new I am unsure where I stand compared with others. My pain both physically and mentally is real but no doubt many have it worse, much worse. But I am confused and not in a good spot. I ask for your help and in turn promise to help others once I “get there”.
I am anxiously looking forward to all your input and one day hope to help others once I can navigate this new life
I tried to be as thorough as possible to help give the background so this is very long. If you’re looking to help but don’t have time, skip down to the summary and questions.
My name is Rich and recently have had some issues with my left hand. I am 41, slightly overweight, but rather athletic and muscular and have been able to exercise for most my adult life and generally healthy. Physicals yearly we’re always great. Still, I’ve always had 10-25 pounds to lose. I eat healthy about 80 percent of the time but my 20percent of the time can be large calorie meals. I’m married with a 4 year old and another one on the way imminently. I work an office job with a lot of typing. Back to my body, over the last two years I’ve had some inflammation type issues as I’ve attempted to lift heavy weights, usually something will tweak in my shoulder. Ive gone to doctors but never figured the cause, but rested and was prescribed duexis, a super ibuprofen, and that has helped. I have no idea if that has anything to do with psa, I think probably not.
At the turn of the new year I wanted to run a lot. I had run a fair amount in the past but made it a commitment to run 5-6 times a week. After a month and a half I had some knee pain, and then what I believe shin splints. Running stopped since. It was at this time I also noticed just sitting on the floor to play with my 4 year old for more than 5-10 minutes left me in rough shape- upon getting up my back and knees were really stiff and I would have to move soooo slowly to get up and be able to walk again. I have similar feelings upon waking with my knees, back, and even side of ankles. Good days and bad days but I am 50/50 on this being related to psa. Some days were better than others.
Finally to what made me go to the doctor. A few months ago I had my 4 year old on my shoulders and when I went to lift her up off me, my hand froze with a bolt of pain. It was both painful and strength limiting at the same time. I persevered through and didn’t drop her but I became scared of what might happen. The following days and weeks I’d notice lingering stiffness and pain in my upper hand and left pointer finger, usually along the knuckle or the sides of the finger, then the middle finger, then the index finger. For the most part if I am just resting, things were ok, but certain strength using functions of the hand would trigger the pain/lock/stiffness in varying levels. By the time I went to the doctor after a month or so of this just making a light fist could onset the issues and I now feel it in every finger to some degree. Some days I feel a hot almost burning pain along the sides of my fingers even in a resting position. Back to the super ibuprofen duexis, I thought that this has helped and told the rheumatologist it did. I am not so certain it does anymore. If I take two I think things feel less severe but it’s still there. I now am starting to feel it in my right hand slightly, my left wrist has a tingle.
Doctor’s resultsRegular doctor took x rays of hand and did not see anything. They said to go to a rheumatologist. They tested for rheumatoid arthritis and this was negative. Lyme disease negative. I found Dr harry Shen at NYU langone. We spoke for a while and he mentioned family members with psoriasis. I remembered my aunt (father side) has it bad, her arms covered. She’s very overweight and struggles to move in her 60s and 70s. I have no idea if she has psa but I do know she has psoriasis. My mother passed when I was a teenager but I remember her having smaller clusters on her elbows, not sure if diagnosed as psoriasis and she was not related to my aunt. The doctor ran a test and said the test didn’t confirm psa but tested positive for a protein, C-some number(sorry was over the phone and I do t remember) I think he said, that points us in the direction of psa. He called it a smoking gun. I have no psoriasis skin issues at this time. I am a 41 year old fairly healthy, muscular , if not slightly overweight Caucasian male of Italian descent with sudden onset hand and finger pain, sometimes crippling, that started out of the blue. Started in left hand, and now is in a right hand finger or two. I feel tingling if not “pain” in my left wrist now. I liked the doctor and feel like he is on the right track but I want a second opinion before making a major life adjustment. . I have a LOT of questions. He prescribed me sulfasalizine and only said that it may cause some upset stomach and takes two months to kick in. After reading here, I have not started taking the drug, it seems more serious than a little “upset stomach”. I didn’t realize this was an immune compromising drug and has a host of other complications. I was hoping taking duexis would work for me and keep things at bay. I stare at that bottle of sulfasalizine pills every day and wonder what will happen to my life once I go down that road. I am beginning to think I don’t have a choice but I would like to hear everyone’s experience.
Ok I have tried to provide as much of a background, here are my questions, all opinions from personal experience welcome, I fully understand no one is a doctor and I should ultimately only follow a doctors advice or check with them first, I hold no one liable and appreciate all personal experience:
First can anyone recommend a great rheumatologist for a second opinion in Manhattan.
The doctor said that I am not confirmed as having psa, but the protein test points in the right direction, along with having and aunt with psoriasis. Is there a definitive test that will say “yes”?
If my hand pain is getting worse, is the only way to stop the progression by starting a DMARD?
If taking a DMARD lowers your immune system, will stopping taking them restore your immune system?
Is there any other way to treat this condition that allows a normal/semi-normal life?
If left untreated other than ibuprofen am I risking serious damage? Will this take over my body if left untreated?
Will the sulfasalizine stop working potentially requiring a switch to more debilitating drugs? Reading on here that seems to be the case for some, and as a 41 year old expecting a newborn this is my greatest fear. I want to be able to play fully with my children. I want to throw the baseball in 10 years as my dad did with me.
I read to eat antioxidant rich foods and cut out fried, processed, sugary and alcohol. I have tried this but I have not been able to pinpoint what’s a good day and a bad day. Yesterday I ate pizza, pasta and had some beer and today’s actually a better day. What has been your experience with eating certain types of food and it’s effect on pain/advancement of the disease?
Any other supplement to consider? I currently take vitamin b,d, am going to be more vigilant on taking fish oil, and a friend said they heard circumin helps with inflammation when I was discussing my shoulder? Any experience with curcumin? Two weeks in and I don’t think I notice anything.
If I have 5 or more drinks with sulfasalizine am I in big trouble? I’m not a massive drinker but 2-3 times a month will have more than 1or 2.
Do I really have to avoid the sun on sulfasalizine? The beach is probably my favorite activity/place
Any experience with losing weight and an improvement in symptoms? It’s a chicken/egg scenario for me, that if psa is causing my knee issues I won’t be able to get my metabolism up to lose the weight needed. I think the knee and lower back may be unrelated but I’ve never found the cause. I want to get in great shape but my knees and my hands are making this difficult.
For hand issues, does anyone every try to “work through the pain” to see if using the muscles and getting blood flow in the area helps? Are there exercises that improve the hand and finger area?
Anyone ever NOT start a DMARD and improve? Or is this a life sentence that will only get worse?
Thank you any and all of you that will explain you experience. I am scared. I am depressed. I have been depressed before this, but never professionally diagnosed. I kind of hate doctors and the doctor process. Like when trying to fix my shoulder unsuccessfully all these years, it gets frustrating playing the “we don’t know what it is, let’s just see if it’s not this and keep narrowing it down and maybe we will get there”. I don’t want to do that with my brain. I have read some of your stories and can see that not being depressed will help how you feel from psa. In general the older I get, the less confident I am in doctors. I’ve wasted a lot of time taking off work or sacrificing family time to not get things fixed. All doctors are not created equal and I don’t like trying to find a good one. But I had a whole bunch of things that made me depressed and now I feel beaten to the ground with the psa. If I thought I had some problems before, well you never know how good you had it until the next problem. I feel like life can only get worse and I didn’t think 41 was that old. The idea the psa will get worse and I can’t at some time in the future be there for my children as they grow has me terrified and sad. The idea I may one day drop a child if I get a sudden freeze also scares the hell out of me.
I really am hoping to hear a lot of feedback from everyone and especially if someone is in a similar boat to me in their early 40s.
I have not even told my wife because I don’t want to stress her carrying our child. I also feel like less of a man, I need to be the family protector and I realize it’s cave man mentality but I want to be seen as the strong protector. I don’t want anyone to worry. I also don’t want to feel like a cripple and have people treat you differently. So I also have not told work. I don’t think friends would understand what this is so I can’t explain to them. It would sound less severe than it is and they wouldn’t get it and again, view you as a cripple. It just does not seem like people understand what psa is.
Again I thank you in advance because I am alone, confused, sad, and increasingly desperate.
I have no one to get through this except you all.