Great Advise!! Be proactive with your treatment. Don't wait until you have joint damage until you do something-that is old school. My podiatrist makes me so angry everytime I see him he says-I don't think that you have PsA-because the xrays of my feet are perfect. He doesn't understand that the reason they are not damaged is because my rheumatalogist is treating my disease very aggressively and has from the begining. Buy the way- I hold my nose and still see this guy because he is the only one in town and I have to have steriod injections for plantar fibromas ( benign fatty tumor). He also says that my screaming achilles tendon pain is not enthesis.
tmbrwolf329 said:
Madseason: I totally understand where you are coming from, but remember: fear the disease, not the treatment (thank you, Seenie!) Even though you feel as though your PsA isn't "that bad," you have the potential to have significant damage to joints while you are in denial of needing the meds. I'm not saying this to be mean - not at all! I am just saying that you need to balance your mobility/pain level/fatigue now against what it is likely to be if you don't treat the disorder. I went through a pretty long period of time where I chose not to take the meds...and here I am in a 4 year long flare with no end in sight. Please, please, please learn from my mistakes and get into the doc and start taking those meds religiously.
Megster: If I have learned anything thorough this journey, I've learned that taking care of you absolutely HAS to come first. I've taken the road trips knowing it was a really bad idea, and wound up suffering for it for weeks. Disappointing your child is heartbreaking, but I would bet if you asked your daughter, she would much rather you be healthy and mobile than take the risk of causing you more pain/damage. Also, having just gotten over shingles, your immune system is still in bad shape. You really cannot afford the potential to get sick again. Just recently my husband's grandmother died, and rather than risk getting sick and/or having my flare get even worse, I sent my husband, his sister, and their mom off to the funeral without me (in a different state). I felt terrible about not being there for people I love very much, but I knew that the trip could potentially have put me in the hospital, and that would have been harder for them to cope with on top of dealing with the grief from the funeral. Can your husband get a few hours extra off work to take her? I know that isn't an ideal solution, but it is a solution that will alleviate some of your guilt, get your daughter to the college on time, and keep you from putting yourself at risk. Sometimes we have to make the decision to accept the most benefical alternative, even if it isn't ideal.
Good luck and hugs to both of you.
Thank you, tmbrwolf. Very helpful indeed. Esp as I am also dealing with extremely bad tooth pain which for various reasons has gone on for some time---who would have thought that 'inflammation' in one's system b.c of PsA also affects nerves of teeth? yet so it seems.......
Frankly, I always 'forget' that I'm dealing with things differently than the people around me. So that things which for many of them are so effortless are for me......very difficult to the point of being just about not worth doing. I keep comparing myself to 'healthy' people, to my loss, obviously. I appreciate your reminder of what we need....
tmbrwolf329 said:
Madseason: I totally understand where you are coming from, but remember: fear the disease, not the treatment (thank you, Seenie!) Even though you feel as though your PsA isn't "that bad," you have the potential to have significant damage to joints while you are in denial of needing the meds. I'm not saying this to be mean - not at all! I am just saying that you need to balance your mobility/pain level/fatigue now against what it is likely to be if you don't treat the disorder. I went through a pretty long period of time where I chose not to take the meds...and here I am in a 4 year long flare with no end in sight. Please, please, please learn from my mistakes and get into the doc and start taking those meds religiously.
Megster: If I have learned anything thorough this journey, I've learned that taking care of you absolutely HAS to come first. I've taken the road trips knowing it was a really bad idea, and wound up suffering for it for weeks. Disappointing your child is heartbreaking, but I would bet if you asked your daughter, she would much rather you be healthy and mobile than take the risk of causing you more pain/damage. Also, having just gotten over shingles, your immune system is still in bad shape. You really cannot afford the potential to get sick again. Just recently my husband's grandmother died, and rather than risk getting sick and/or having my flare get even worse, I sent my husband, his sister, and their mom off to the funeral without me (in a different state). I felt terrible about not being there for people I love very much, but I knew that the trip could potentially have put me in the hospital, and that would have been harder for them to cope with on top of dealing with the grief from the funeral. Can your husband get a few hours extra off work to take her? I know that isn't an ideal solution, but it is a solution that will alleviate some of your guilt, get your daughter to the college on time, and keep you from putting yourself at risk. Sometimes we have to make the decision to accept the most benefical alternative, even if it isn't ideal.
Good luck and hugs to both of you.
I have been having horrible tooth pains for 2years. I had 6 front top teeth changed into caps. Long story short the butcher of a dentist put wrong size caps on. As I am now at specialist getting it all redone and about to sue first dentist. The pain has been horrendous, now I believe the nerves are extra sensitive from bad fitting caps and now redoing it all. Never considered my PsA could be a huge contributer to pain. I am on Enbrel usually (except for cold now) What do you do for tooth ache pain ?? Where does this awful disease not go??
UPDATE: I gave in and took two Norco 5/325mg yesterday, so I got to sleep for about 4-5hours and felt so much better! I woke up around 10a, felt much better & finally showered and got to do work & did 3 visits & about an hour of paperwork! I think that was really an improvement since I didn’t even have enough energy to shower since Saturday! My energy is slowly improving and I am being optimistic despite being up until now. I having some back pains now (on top of fatigue & left knee to foot pain)…maybe I worked a bit too much, maybe I should have done less. I don’t always take my Norco as I don’t like to depend on it. Usually Nabumetone 500mg 3x/day & Flexeril is enough to dull the pain & Tylenol PM puts me sleep. Anyway, will try to go to bed again, hopefully get some sleep as I have scheduled to work again tomorrow–I can’t miss anymore work for this week or I won’t be paid enough to pay bills next pay period.
Thank you all for you kind words here!
Sincerely,
Hannah
Hannah, a couple of things. Please have your doc do a check on your lithium levels just to see if they are on the high side. (not necessarily abnormal) Nabumetone had tendencey of causing high lithium and consequently causing some neuralgia and sleep issues. You are taking a lot of it. I realize its a great med for synovitis, but synovitis is generally not the cause of back pain. There may be a better NSAID for you. You shouldn't need to supplement it with tylenol.
Also if you need muscle realxants, that fine tut if you are taking them to help sleep there are better meds for that not to mention if you take them regularly, they are not nearly as effective when you do need them. Something like Amitiptyline (about 25mgs) helps pain control and allows sleep.
Just a few things to talk about nest doc appointment.
Thank you to Hannah for getting me back into reaching out for support from this group and thank you to all for the reminders, suggestions and "gentle pushing" to take care of ourselves. Because of this discussion, I called today and made an appointment to see my doctor and talk about getting my meds sorted out. With every step I took today, as my knee stabbed me with pain, I thought about the words I've read here and what's probably going on inside the joint that I can't see happening. I vow to try not to be difficult with my doctor or to be non-compliant (haha~but I refuse to take prednisone). Also, I am a firm believer that there is no body part that is immune to the effects of PsA, so I think we need to keep that in mind when odd things linger, like tooth pain or like my eye that drips tears constantly for no reason other than inflammation of the tear duct according to my eye doctor, but doesn't hurt or itch etc. Seriously, who gets that?? tntlamb, I think I will talk to my doctor about my sleep problem and what might help me. I've tried the Tylenol PM but it wakes me up after about 4 hours and then I'm wide awake and fidgety. So it's worth asking. Thank you to all and thank goodness Spring is finally here!
MAdseason, just read your post and I'm exhausted just thinking about all you have to do!
I, too, still live in a house that feels awfully big, now there's only one 'child' left at home to help with house chores... And have been in the situation of having high need children, all of whom I homeschooled through college. But you are working in what sounds like a stressful job.....have a spouse who probably just b/c of his age may not get everything you tell him.....oh....I do hope you start to realize that you have a very real illness and that your needs are a priority. And that if YOU don't make them a priority, no one else will....
(I speak as one always having to re-learn that message....(
madseason said:
madseason: Prednisone is one of my least favorite meds. If your doc intends to put you on short term steroids, discuss dexamethasone instead. I have far fewer side effects, and a lot less general hinkiness with that one. Of course, what works for me won't necessarily work for you, but it is worth a try. I'm really glad you made the appointment. I know sometimes it is tough without a lot of support at home, but you can do this. Lean on us and we'll help you out as much as we can. :)