Hi, I am wondering how you all deal with long term pain from the flares, joint deterioration etc. my rheumy hasn’t prescribed pain killers as yet, so I am taking some when I really can’t manage but it is hard not to get down and frustrated sometimes. I do try and take my mind off it with what I can manage but it’s bloody hard when every time you move it’s painful. And it’s not going anyway. I do meditate etc, but what else can I do. I am also going to see a chronic illness counsellor too so that will help a bit.
Hi Robyn, sorry to hear you're in pain. I understand, my rheumy is like that. He prescribed 20 Vicoden and that was all that he would give. His suggestion was to go see a pain management doc. I spoke with general practitioner and they were ok with prescribing some pain killers. Have you tried Tramadol? It is a non-narcotic pain reliever for moderate to severe pain... docs seem ok prescribing that as it's non-narcotic. Am about at the point myself of going to pain management doc, the pain in the winter is hard to take
There are a couple of options, and all have their place with different people:
Short acting narcotics, like Codeine, Vicodin, Percocet.
Long acting narcotics like OxyContin or the Fentanyl patch.
Medical marijuana. I haven't used it but several people in my autoimmune disease support group do (it is legal where I live). There are different strains that have more or less mental affects. For something like PsA you would want a strain for pain and relaxation.
Antidepressants can help with pain.
Non-medical things like hot / cold therapy, massage, acupuncture, therapy, etc.
I may be forgetting some, I'm sure others can add to what I said.
Thanks. I have to admit that medicinal marijuana is not legal in Australia but I have tried it for pain relief and nausea. Which I have almost constantly. It does take that stabbing edge off for a while. But isnt socially acceptable and does smell. I had to give up working nearly two years ago because of Psa and all that went with it. So I am thinking now about my long term future and coping with the pain. It has eaten away my left shoulder joint at the very least (still waiting for rheumy to check my other joints for damage), and this causes constant pain in the joint and surrounding muscles. Then add to that my left hip, right hand and right foot and its a pain fest! I am trying to explore all my options while thinking about how they and it affects my quality of life. I adore this website, it gets me through the hard times
I'm in NY and waiting for medical marijuana to be legalized. I would rather not smoke it for a few reasons, but would willingly use other forms of it, to be kept FAR away from my children. Though right this moment I'm doing pretty well, and even off the anti-inflammatories.
I have kids at home so there is no way I would be able to smoke or vaporize it. I've reseached tinctures, medibles (medical edibles), etc. In 2014 we should have state stores selling it, I might wait for that. Right now I would need to pay $150 to get an authorization from a dr., including getting some of my medical records sent to the authorizing dr, then go to a different place to get the medical marijuana (MMJ) and pay for that. It just seems like an exhausting process, I already have too many appointments to go to :)
Stoney said:
I'm in NY and waiting for medical marijuana to be legalized. I would rather not smoke it for a few reasons, but would willingly use other forms of it, to be kept FAR away from my children. Though right this moment I'm doing pretty well, and even off the anti-inflammatories.
I don’t have kids at home anymore, they are all adults but still wouldn’t smoke in my house. To try it cooked in stuff I would have to somehow get the butter and then bake stuff. That would probably also smell. I am not doing well unfortunately.
Thanks ilika, I have tried most of those but I am going to see a pain management person. Quite incidentally this afternoon while I slowly got myself back to our car after a family gathering I noticed on the church I was limping,dragging passed a pure white dove sitting on the cross with a green stick in its mouth. I was captivated by the heavenly sight. Not to mention we don’t have white doves around here. I felt like it was a message telling me that while I am struggling and in pain I am looked after in other ways and not alone.
Ilika,
There are full body bathing suits used by various groups that advocate modest dressing for women and girls. I've seen them at my pool and read reviews, and they are not heavy and really work well. You can find them all over online. Here is one: http://hydrochic.com/
Also, I don't know where your P is, but www.H2Owear.com where I get my suits (the full front zip unitank, in case anyone is interested) sells full zip tops to go over your suit, AND full swim tights. All in sizes XS-5X. My first suit lasted 10 yrs (no kidding). So you should be able to cover whatever parts you need, and swim in peace. I hope that helps, it makes me sad to think of someone with P not being able to swim :(
ilika said:
I would personally like to be able to swim in a public pool, most of which I've been tossed out of because the staff at such places don't like how my skin looks and can't be convinced that it's not contagious or otherwise a danger to others. And I'd love to find a massage therapist that can deal with psoriatic skin...
Marietta- Those are great looking! I don't have the problem with psoriasis, but some of those skirts on hydrochic.com look pretty awesome.
Marietta said:
Ilika,
There are full body bathing suits used by various groups that advocate modest dressing for women and girls. I've seen them at my pool and read reviews, and they are not heavy and really work well. You can find them all over online. Here is one: http://hydrochic.com/
Also, I don't know where your P is, but www.H2Owear.com where I get my suits (the full front zip unitank, in case anyone is interested) sells full zip tops to go over your suit, AND full swim tights. All in sizes XS-5X. My first suit lasted 10 yrs (no kidding). So you should be able to cover whatever parts you need, and swim in peace. I hope that helps, it makes me sad to think of someone with P not being able to swim :(
ilika said:I would personally like to be able to swim in a public pool, most of which I've been tossed out of because the staff at such places don't like how my skin looks and can't be convinced that it's not contagious or otherwise a danger to others. And I'd love to find a massage therapist that can deal with psoriatic skin...
For a public pool I would definitely go with a chlorine pool vs. salt water. I've heard to too many people getting weird infections when using salt water public pools (we had a backyard saltwater pool when we lived in AZ, not problem there). Chlorine is potent at killing germs AND has the benefit of improving my psoriasis for some reason.
mimiB said:
This is a great discussion ! I love the swimwear, and I know that getting in a pool to walk or do light stretching would be good for me. I wonder, though, about bacteria in the pool and being on meds that suppress my immune system.
As i live in denmark where healthcare is paid fore, i use fysiotherapi twice a week, and hot water training once a week,all for free due to my diagnosis :-) Hot water training is so god damn nice.
I use cannabis as if it were legal, due to the circumstance that it substitude morphine.
I vaporize, cook in full fat milk, and as last resort smoke, all with success.
I have studied the issue well, and also studied why cannabis is no longer legal. (What a disaster of a capitalistic bunch of united states)
Im so looking forward to upcoming official medicine with cannabinoids.
It was a beautiful thing to see. I have had a rough time with this disease and it has gotten worse lately. Seeing that dove on the cross gave me strength to keep on keeping on. I used to loveto swim but my shoulder has now prevented it. Not to mention going to a public pool fills me with fear about catching something from other people and germs. Being immunosupressed as made me very concious of that sort of thing.
Maybe I should come visit you!
Kurt, a Danish guy said:
As i live in denmark where healthcare is paid fore, i use fysiotherapi twice a week, and hot water training once a week,all for free due to my diagnosis
Hot water training is so god damn nice.
I use cannabis as if it were legal, due to the circumstance that it substitude morphine.
I vaporize, cook in full fat milk, and as last resort smoke, all with success.
I have studied the issue well, and also studied why cannabis is no longer legal. (What a disaster of a capitalistic bunch of united states)
Im so looking forward to upcoming official medicine with cannabinoids.
mimiB,
I just discovered the Tiger Balm ultra in the past 6 months. It sucks trying to get it out of the tiny lip balm sized jar. I like your idea of a Cool Whip sized container!!
I make a little wad of tissue and put that in the jar, then wipe it on affected parts. That what I don't get it on my fingertips and then accidentally in my eye or something.
mimiB said:
I happen to love Tiger Balm Ultra and wish it came in a Cool Whip sized container instead of those little lip gloss sized ones. It is powerful stuff, though, and a little goes a long way.
Genius!
Sometimes when in brain fog I miss the darndest things :)
mimiB said:
I dig it out with a Q Tip :)
mimiB said:
I dig it out with a Q Tip :)
Interesting :-) Digging out "brain fog" with a Q tip :-)