Does it ever "get better"? Will I ever be "in remission" and pain free, even if only for a couple of days?
I've been in pain for almost 10 months straight and it just seems like it will never end and it's getting really old. I know there are many who have been in pain (and worse than mine) for much longer and I shouldn't complain. What exactly is a "flare" anyway? Doesn't that imply that it's bad for a little while and then goes away and you feel ok until the next one? If every spot I've hurt in is a flare, then my body is like the 4th of July. I don't know anyone in my family or circle of friends who has this. If this is genetic, why am I the only one in my family who has it?
I see the Phil Mickelson commercials for Enbrel and it seems like he took one shot and everything is now wonderful. Is that true and he's just really really lucky or is he just a paid spokesman (and says what they tell him to)? I took my first Simponi shot and it started to get better every day for the 1st few days (but never gone) and I had hope, then bam! the pain started coming back. I've been counting down the days and hours till I can take my next shot and I don't even know if it will be like the first one and just give me a glimmer of hope for a few days and take it away again. This whole thing really sucks.
I have to wonder if I hurt more because I really hurt more or if I hurt more because now I know the reason I hurt. In the past, I would push the pain aside as much as I could and go on with things....maybe take some motrin, lay on a heating pad, get those icy/hot wraps from the grocery store, or try to "stretch it out", but life didn't stop. I feel like life has stopped or paused for a bit because I can't do things any more. Is getting a proper diagnosis clouding my mental ability to block it and go on with life? I'm trying to remind myself that now that I know what it is, the dr. can fix it, so it's a good thing. I'm just tired of hurting and wondering where my Phil Mickelson type of miracle is.
Will it ever get better? I just want to be able to do simple, normal things without wincing, tearing up, or crying out in pain. I want to be able to go for a walk or bike ride, not climb mountains or run a marathon.
Sorry for ranting and complaining so much -- the last few days have been horribly painful. thanks for listening.
The worst part of PsA is that your questions only have one answer: it is not curable. How it effects you and and how you respond to the various drugs will pretty much be unique for you as will how you manage this 'new' you. I have found that getting help to understand how I mentally deal my response to pain and how my brain responds to knowing I have a weird ongoing condition has been very useful in having answers to the questions you pose. There is no doubt the hurt seems worse the more I think about how bad I feel (and feel sorry for myself) but I control this better now I have that understanding. The following is a note I have made for my next meeting with my rheumatologist. I think it explains my situation after years of various drugs and answers some of your questions.
'During the period between the end of Enbrel and the take-up of Humira I became very ill with strong flu like symptoms indicative of a high inflammation level and high pain levels in my toes, feet, ankles, lower legs, knees, lower back and sacroiliac joints, shoulders and fingers and several ribs.
By the 12th week of taking Humira I felt much better with about 60% reduction in symptoms and I had started a gentle walking and riding my bike program.
Although the Humira makes a huge difference in inflammation and pain levels I feel all the time as though I’m still on the edge of getting worse and the more I exercise the more I get an upsurge of the symptoms. An example of this is that about 2 hours after a longer, more strenuous ride of about 90 minutes I experienced a severe inflammatory response with the severe flu like symptoms and pain in all the previously listed areas plus more hand joints/ tendons. I took a Celebrex and the symptoms subsided after about 8 hours and I was fine the next morning.
I have been taking a Celebrex every day since then and the upsurges after exercise have been less strong. The daily Celebrex also seems to have reduced the extent of the daily swings of pain levels and feeling fatigued.
Overall I feel much better than at the end of the Enbrel period.'
This is the place to rant so don't apologise for that. As far as the Phil Mickelson add's go they make me angry because although he and some others may have a real remission I get the feeling from this forum it is a false hope for many of us.
Ranting is quite ok...we spend so much of our lives just living with what we feel and giving the same answer to the age old question "how are you today...fine thankyou" that we all have to have a place where we can come to be open and honest about how we really feel.
I too wonder about the remission thing...my rheumy keep saying "our" goal is remission; I just don't think it is a realistic goal though. I take oral MTX and Plaquenil...biologics are not an option for me due to a couple of reasons...cost being a big one. At first I was glad to see Phil Mickelson going public because I was hoping that it would open more avenues for people to hear the reality of what we deal with...but that is not how it has happened. To me it looks line anyone has this ability to get the relief with those meds and never mentions the cost or that it is not magic. So yes now the commercials make me a little angry too.
As I sit here typing this I am thinking about the fact that I have to go to work tomorrow. I had to cook on Thurs. do the grocery shopping on Friday plus laundry and yesterday had to get the grass mowed as my DH can not do those things due to a severe heart issue. So today I tried to get some Christmas decorations put up and I am completely and totally exhausted. Mind you there are 3 girls in our office but everyone else is off tomorrow because they have the extra time to take because they haven't had to use the vacation hours because of illness.
So that is my rant for the day. Thank you all for listening and being available with your support. I am so glad I have found this group.
When the pain seemed to overtake my life it was hard to "look at the bright side" it's still a daily battle with me. I love the Humira and celebrex mix. With being an active Marine, I fight back the tears to stay in the front of the line. Humira cleared my spots and took a chunk of the inflammation away. The celebrex took a few weeks of constant use before I noticed a difference, but it took alot of swelling away. I wish you the best of luck!
I am so glad we can all be here for each other. This is the place to rant when you can't handle it anymore. I too am sick of hurting, sick of complaining, sick of feeling "sick". I feel the worse for my poor husband who listens to me complain, moan, and cry about it. As I look back on my journey, I've probably had PsA for 3+ years. My GP was treating Scalp Psorasis as dandruff, my foot pain as plantar's facititas, my recurrent stiff necks as "bad posture"? (REALLY?) The terrible fatigue must be the hypothyroid (looking at me like HYPOCHONDRIAC?) The pain specialist I see for my chronic back problem was telling me my SI joints are wearing out (not knowing about the PsA.) All the while, I had various aches and pains I couldn't figure out, so I pushed on too.
What finally clicked for me was the Phil Mickleson ads. He described how I felt! At least I had a name to go with what I felt! (Wish I had Phil's money to help me pay for the treatments!!!) So, I started researching PsA online, and when I read the description on the Mayo Clinic PsA page - IT WAS ME! So, I printed off their diagnosis sheet and brought it to my GP on my last visit. He said "yep, you are probably right". I asked, "what can I do about it?" He stated "not much, you should talk to your pain doc or the dermatologist I sent you to". I told him I was scared of meds because my brother (has psorasis not PsA) got Non-Hodgkins lymphoma from the meds and with that family history, I am not too excited to try them. He said, then there is not much we can do for you. And, $80 later, sent me out the door. Did it help my achy body, stiff throbbing hands, feet, neck, etc.? NOPE. I tried to get into a Rhuemetologist here and they wouldn't talk to me without a referral. I am seeing my pain specialist Wednesday and hoping he can get me into a Rhuemetologist ASAP. I can't go on like this much longer either. I do not have time for this, I still work lots of hours.
So, long way of saying HANG IN THERE. We are here for you and TOTALLY understand where you are coming from.
Allan, Alma and Trees, thank you so much for the advice, understanding and encouragement. It really does help to know there are others out there who know what I'm going through. And that it's ok to whine, complain, vent and rant every once in awhile.
Kiley, you're definitely an inspiration. I retired from the military almost 7 years ago after 20 on active duty (Air Force, so not nearly as tough as the Marines). I'm thankful that this didn't hit me full force while I was in, although I think I had some of the symptoms going back to at least my 15 year point if not earlier. I don't think I could have dealt with it in my early military years with the same grace as you. Luckily I had a "desk job" toward the end, even if it was 12 hour shifts and there some TDYs toward the end; at least my time in tents was way past.
Lainee, thank you too. I think I'm in a similar boat as you, having things misdiagnosed (other than the psoriasis) as other things (tendonitis, "oh you're just tired, try some prenatal vitamins", etc.) for way too long. I was in a vicious cycle with the doctors on my fatigue, where I would go in tell them how exhausted I was and that I was tired of being tired, and after tests and no diagnosis, I'd finally give up and go in again 6 months later, or a year later; feeling like I was crazy. Until recently I was pulling 40+, sometimes 60+ hours a week and after my PsA diagnosis I said "ok, stop, no more, it's time to take care of me". I started taking time out for lunch, I'm working on actual breaks (instead of walking to the office kitchen to get more coffee and back to my desk), I resigned my position as a team lead and requested a less stressful "in the shadows" kind of job where I can shut my door put my feet up and not have to deal with people and I can try to block out the drama.
On the bright side, my husband just gave me my first "at home" shot and it went great. He did a wonderful job and I somehow managed to handle it without crying, screaming, pulling away or running away from him. Now I just need it to work - fingers crossed!
I cant accept that this isn't at least controllable if not curable. All those rheumatologists with their poisons which cause other problems are just treating symptoms. It's inflammation. It's an out of control immune response. The immune system is mixed up, imbalanced and it's attacking healthy tissue. I believe mine was triggered by a chemical - zyban actually because I wanted to "Get healthy" and stop smoking, haha. I'd have been better off on 40 cigs a day since 2002. So a chemical, or something, triggers an irrational immune response? So, yes very simplified, something should be able to balance it back to normal? Up to now I've got through 5 months with very little pain and reduced swelling for the first and longest period in 9 years. I changed my diet then threw away the tablets. I've somehow caused it to go into remission. It's all chemistry at the end of the day. I'm aware that my PsA could flare at any time and I have a "significantly damaged joint" in my right ankle because of the years I've been living with the false security that Methotrexate was a DMARD for PsA - it clearly isn't - as proven by my x-rays and a study which concluded in November 2010 that Methotrexate is not a DMARD in the treatment of PsA. Methotrexate performed no more efficiently than the placebo. My specialist is bizarrely unimpressed with my claim that the pain is now a dull vague ache compared to what it was while on methotrexate. I haven't taken a pain killer or arcoxia for months now. He doesn't actually believe me it seems. However I am in remission and it's looking good. Some slight swelling, a little heat over that joint but absolutely nothing like it has been for the 9 years previous to throwing away the drug. Granted, not everyone will react as I did, that particular poison works for some people, or they have less pain at least, but for me it's been a nightmare until recently when I forced it into remission. My blood tests were pretty good too after three months of the new diet and supplementation and no poisons - so many values returned to within normal range that were previously worrying. It doesn't hurt to try something new, it can be done while still taking meds and then maybe reducing the dose if you feel any better over time. I'm not accepting that this thing cant be beaten - to do so is way too depressing.
:( I wish I could say it gets better. I'm going through the same thing. Some nights I just cry myself to sleep because it's overwhelming. I get maybe 1 or 2 good days a month and the rest I feel like crap. I also used to be confused about the "flares", because it seemed like my pain is constant. Last month the inflammation was so bad I HAD to call the doctor and get put on a steroid pack. I was so sick I did not move for days and days - apparently that was a REAL "flare." The constant pain seems to just be PsA/fibro. :( The thing I keep telling myself is throwing in the towel just is not an option, so keep kicking! The pain will not last for eternity. "You never know how strong you are until being strong is the only option you have." Hang in there!!!
Thanks Suzanne - it's nice to know I'm not the only one. On the bright side, I had a little improvement for the 1st week after the 1st shot. It's been 10 days since my 2nd shot and I'm only having a little pain in my left hand (and I'm convincing myself that's because I didn't take any Celebrex yesterday or this morning). I took a Celebrex this evening so that I can hopefully avoid overnight pain and loss of sleep. So I'm going to do my best to try to stay positive, that maybe it might take a few months for the medication to kick in and that each month will get a little better. I hope you feel better soon!
I'm new to this site and just read your blog. I can really relate to how you felt in November. I was wondering how you're doing now. Has it gotten any better?
Hi ! I totally understand your pain !! I get my Remicade infusion every 4 weeks , and that is SO menatlly and physically draining !!! And sometimes I get relief right away for 3 weeks and sometimes I get no relief at all ! A flare up for me is when my joints swell up , like the size of golf balls, and are hot and tender to the touch and my god I cant get off the couch, ! They put me on prednisone when I get that bad. I have had this disease for4 years now, I am 31 . UGH !!! I will say this it comes and goes. I have good and bad days, the bad outweigh the good. Remicade and Methotrexate have been the only treatment I have been on and I have had good experience with it, its not an easy disease to live with. I havent had a psoriasis outbreak in 4 years.. and wish to never have that experience again !!! It was awful !!! but the arthritis part is bad !!! Maybe the Simponi just isnt the right fit for you, my grandmother was on it and it wasnt the right fit for her .... I would talk to your Rheumatologist :) good luck !!!