SK, please describe what you meant by saying that the arthritis went after you. We’re you referring to cartilage depletion? Or we’re you speaking about the pain level? Thanks! Ilysoph
Hi Ilysoph,
Yes, cartilage, discs, facets... who knows what else! Because it was a car accident that I could not get over, and no one could figure out what was going on with me, I have no skin lesions what so ever, there were always more x-rays, MRIs, mylegrams, CT scans and you could really see a difference, bone spurs, even spinal stenosis!
Of course there is also secondary Sjogrens and that is more than just dry eyes and mouth, yet another systemic autoimmune disease, and Raynaud's, other things include Overlap syndrome where you have symptoms of other Autoimmune diseases without yet having them. Hopefully I never do. Some are lucky enough to just have one AI, some of us are not.
I wish I could have been diagnosed sooner, been on the biologics sooner, to have prevented the damage.
Before that rear end accident, I worked very aggressive 12-14 hours a day, on my feet, commission furniture sales in a HUGE show room, did a combo of yoga, aerobics, kick boxing every morning, with my own house and yard, helped my Mom, helped her care for my late grandmother, late brother... I was unstoppable, felt great, looked great! Remarried, helped my husband run a big flea market/antique mall besides. Had my Granddaughters to stay on my days off.
Always kept up with Dr and Dentist visits. Great health, just some seasonal allergies, and went to DC for regular adjustments from being on the concrete floors, and a few aches and pains from 2 old rear end accidents that I DID get over.
Of course FMS was the first thing diagnosed, caused by chronic pain, Myofacial Pain Syndrome, so I did all the eat right for your blood type, the anti-inflammatory diet, the brain diet, acupuncture with Chinese herbs, ceragem beds, all types of therapeutic massage, arthritis swim classes, yoga, when all that failed after several total 'crashes' then the pain management started, went to 5 of them, had already been to 3 top neurosurgeons, Johns Hopkins, University of MD included in both. 2 neurologists, then 7 years later after the GP finally got a false positive and then a full positive on the Sjogren's I was lucky enough to get into present Rheumatologist/Internist/University Professor. I had to BEG to get in, he's a very busy man.
Can't cry over spilt milk and tons of money down the drain and time lost, job loss, and progression, just never going to be too thankful for it, you know?
Surely there are things I have forgotten, have that PsA brain now too!
It affects us all differently, and I did not realize that mine was genetic and really unavoidable, never realized the reason my grandmother, and her mother, and her mother, who were hump-backed, hunched and gnarled have what I now have.
Most surely my son has it more advanced than I, he is in denial, just gets shot up at pain managment, won't go to Rheumatologist. All my grandkids have psoriasis, great grandson born with psoriasis.
I told Enbrel that I would participate in any way I could to help them, give them all info I can in hopes that it will save my grandkids from it.
This is surely more than you asked for. Just please do as much research as you can, get the very best doctors, and do all you possibly can to stop the progression and have your lives!
Wishing you all WELL,
SK
Sk gives some solid advice/information. As I read what is written here a few things come to mind. First just as Sk said, to do your research and be aware of what's going on with you. I would tell you to talk with your doctor about all that you're experiencing. When I went to the family doc I had psoriasis for about 10 years by then and was experiencing some pain in my hands, neck, joints and ocassional swelling. I explained to him the pain and his reaction took me by surprise. Right away he was acting like I needed to go to a rheumy right away. In fact he pretty much set me up with a rheumy appointment before I left that day. Now a few things were running through my mind at that point. First, that he was overreacting because my thought was...I was only having some pain in my joints, some swelling and maybe it's because I am getting older. The other thought was that he must be in cahoots with this doc. But I played along with my doc because I had been with him for years. At that point like most, I went home and started to do some research to see what all the fuss was about.
I look back now and completely understand what my family doc was doing then because I now see that timing is of the essence. I didn't see the connection of my psoriasis and the pain, stiffness, and swelling that came out of nowhere. Not to mention the family history connection. I was just sharing with my doc at my routine appointment some things that I was experiencing never realizing something big was coming down the road from a physical standpoint.
One thing I learned from that point on was that YOU have to be your best advocate when it comes to how you are feeling and the assessment you put on the treatment you are getting for whatever you are experiencing.
I wish you luck. I hope everyone has a great day.
Hi JMT,
Its an interesting group here, with an enormous amount of wisdom. Suzanne openly admits she’s a type A workaholic too :), there are those that prefer the natural route for treatment, others mixing biologics with exercise, and still other souls for who it is too late for biologics to have the best result, and probably need regular opoids just to prevent themselves from shutting down with the pain.
Many have fought for diagnosis for many years. In a once removed way, I know how they feel - my father has had chronic pain for years (that has caused early retirement, significant loss of function, and quite frankly a pretty miserable life) that was never really pinpointed. Somebody, once, thought he might have arthritis - but who gets arthritis in their back? Without SI joint changes? And no Psoriasis? So he’s only really known that’s what it actually is in the last 6 months I’ve had it. He’s 63, and he hasn’t been able to dress himself since he was 58. He’s never been able to cuddle his granddaughter because his shoulders don’t work anymore.
However I’ve only had it for 6 months proper. It flattened me in the first 6 weeks, and here in Aus it takes 3 months to get to a Rhuemy (and anything more than NSAIDs), so I had to talk to my company in that first 6 weeks, because I was far from functional ( and with no formal diagnosis - but I’m pretty good with google!).
They are under the belief it’s all under control now. I’m a senior manager in a mining company. With a husband in a high level job, and a gorgeous 2 year old girl. We leave home at about 6.45am for work, and arrive back at about 6.15pm, so it’s not exactly a weekly walk in the park.
So there’s no question you can be pushing through to be a high performer, even with the early stages of PsA, even not if it’s not strictly “mild”. For me personally, I know I have PsA (or at least one of the spondylarthropies), and I’m just holding onto everything by my fingernails, but it doesn’t stop me wondering every day when my luck will run out.
I recently went on a field trip to Africa. Nowadays I’m often the “important white woman” who shouldn’t walk on those trips - usually I end up with a 4WD following me across the bush! This time I graciously accepted the 4WD seat, knowing that the likelihood of me being able to walk more than 2km wasn’t high.
If you are already on Humira, a biologic, and feel significantly better than you did, (and are completely functional - I still struggle with some day to day stuff, even though I do my job well), I 'd be surprised if drug hopping will make a big difference. Finding the little things will probably give you more reward.
At the moment hot packs for my neck are surprisingly good. For feet I love a hot bath, or maybe you could try one of those foot spa things? I still haven’t found much that works for my knees (or hips - I mean how do you stick a hot pack on that!!?).
Anyway, a big part of this is for you to do your own research and be empowered. A good Rhuemy is a great source of info, but it really is your disease to take control of, he’s just the facilitator.
Jen Aus makes a pretty good summary. However I feel an overwhelming need to add to it....... Its important to keep in mind that the disease and the pain are two different things. You may well have the pain under control through any number of ways - Acupuncture, heat, PT, sleep numbers bed, salves, pain meds etc. BUT the disease will plod along. at some point the whole thing COULD blow up on you...... By the same token through other methods you may have the progression of the disease under control but the pain remains. Not all Pain is the result of inflammation - Damage, posture, age, lifestyle can all add to it.
There can also be things that are not disease related that can push you to the edge... Right now I have one of those itchy brown moles right near my L 4-5. That sucker has been driving me nuts, the more it itches, the more it seems my back hurts. Its going away. It took some talking with my derma. he seemed to think it wasn't that big of deal. Only after asking him would the "do it your self wart freezing kit" or a can of freeze it chewing gum remover be the best to freeze off a mole, would he make an appointment.....
http://www.everydayhealth.com/psoriatic-arthritis/how-psoriatic-arthritis-progresses.aspx
What lamb said...
Sure SK! the Castor Oil is used as a medicinal pack - I use it over areas that I am having joint pain and inflammation. I have never used it for psoriasis plaques. You soak a piece of flannel sheet (some say wool flannel, but I can't use wool) and then put it directly on your body on top of where the pain is. Then, because it's messy, place plastic wrap over top and on top of that a heating pad. Leave it for an hour. After you are done you can store the flannel piece in a glass jar or discard it. It usually takes me a day or two before I feel the benefits, but I have felt them!
Good luck!
Sue-Anne