I agree, mataribot, tylenol is pretty much worthless. I think in large doses it probably has some benefits...but's getting some bad review lately due to the damage it can cause. I do take a tylenol pm, just for the pm part of it, but I guess benadryl alone would help me doze off, too. I also have very good luck with excedrin (because of the acetaminophen/aspirin/caffeine mix) for headaches.
mataribot said:
Tylenol is absolutely worthless if you ask me. Especially if symptoms are axial. Narcotics help with sleeping initially, but stop working. If you are depressed I'd consider an antidepressant first, if you are depressed. I've done or taken several sleeping pills, all with the same result - work initially, then stop working. I have noticed that the pain and stiffness is Worse in the morning after taking them. Who would have thought not moving around at night would cause so much pain. To keep a long story a bit shorter, there is a new sleeping pill that came out. I'd acquire about that one. Any GP should be able to get you a month supply. Anymore and you would need a specialist. Again, I have been on lots of sleeping pills and all of them have been rubbish in the long term.
Yes, it helps the stiffness, but some pain is still there. I think it's the damaged joints that really never get better. I'm much older than you (at least if your profile pic is current)--hopefully, you don't have a lot of permanent joint damage yet and you will continue to feel better. It's good that you started Enbrel soon after your diagnosis!
ambrosia said:
Hi Grandma J. I just started enbrel about 6 weeks ago. The stiffness is so much less but the pain is not gone. I know it can take some time so I'm hopeful!
I alternate the three with great success. It seems to only take a few days of the amy to reset the ol' clock. We can develop some level of tolerance to most meds of these types, so keeping the body confused is a good thing. However never underestimate a good single malt or even a full bodied red..............
jhelvey said:
I noticed a few people mentioned amytriptaline--I have been taking it for several months and it has helped alot. One of the doctors that I work with likes melatonin (herbal product) and hydroxytryptophan/also called 5HTP (its an herbal also-its made of the stuff in turkey that makes you sleepy). Of course-always check with your doc first before you take something.
Dr finally gave me amitriptyline 25mg. I was hoping for a lower dose since i over react to all meds. Maybe I can half that little pill..will check that out. My worry is that I am taking Wellbutrin 300 mg and the combo increases risk if seizures...uuugh. What a battle this is. I have tried Melatonin it worked for awhile but then stopped working and created more problems as it was preventing my own body from making it naturally
25 is a very low dose. Pill cutters work well though. They can dispense in 10s The normal dose is 50 mg BID increasing to 100mg BID you will likley not need more than 25. 300 is a pretty moderate dose of Welbutrin. You should be fine.
Not to scare you, Moxie, but just a FYI. I'd be leary of combining 2 drugs that have possible seizure SEs....my husband had a grand mal seizure a couple years ago because of that (he was taking different drugs than you though). Anyway, he ended up on an anti-seizure drug called kepra and it made him a zombie. He was finally taken off it a few weeks ago and he actually has a personality again. If amitryptyline is like Nortriptyline, I took that in a dose of 10mg and it worked really well.
Moxie said:
Dr finally gave me amitriptyline 25mg. I was hoping for a lower dose since i over react to all meds. Maybe I can half that little pill..will check that out. My worry is that I am taking Wellbutrin 300 mg and the combo increases risk if seizures...uuugh. What a battle this is. I have tried Melatonin it worked for awhile but then stopped working and created more problems as it was preventing my own body from making it naturally
I asked the pharmacist and he said 25mg is a very low dose ----saying I won't have any problem with it. Sounds like you are correct tntlamb. My Dr has known me for almost 30 years so he knows all my meds and knows how I react to things it is just more comforting to double check.
My Rheum gives me Trazadone and it has really helped me. I also take Celebrex twice a day and because I didn't want a narcotic for pain they have been prescribing Tramadol, a time release at night and a smaller dose for break through pain. Hope that might work for you. Michelle
I took one fourth of the amitriptyline last night--and slept 5 hours! It felt like a miracle after so long. Sybil, I have been in too much pain to consider an exercise routine. I can't sleep so I pace all night --crying. It's hard to think of an exercise plan with I am crying every day praying for this to end. Hopefully the amitriptyline will continue to help with some sleep and I will be better able to deal with the pain. I don't know if I can continue to work like this either. I did ok last Sat--but Sunday was horrid and I would find myself going on breaks because the pain was intolerable. I have no strength in my hands nor arms and can no longer pick up my small grandchild nor even my little dogs. Thanks for listening to me--everyone--I know it's difficult for everyone and all I can do is say a prayer for us all. Oh and I believe in energy healing so I have been working with that as well...no success yet but I prob need a different mind set.
Thanks Seenie. And I am so glad I found the site too! I have gotten some great ideas and some hope for at least a tolerable future. I have to wonder how many suffer in silence until they have no option but suicide! I can't imagine those without health insurance either---This is a different type of pain and it can be frustrating when people compare it to OS pain---I have osteoarthritis in one knee---that pain is a minor ache compared to this! I know here---people understand. I also know I can refer my patients to this site if I ever come across someone with this in the hospital. I work critical care so probably not but--I will be sure to share the site with any chance I get. : )
Moxie I'm not being a smart ass I promise. As you are pacing at night (and I have been there) take a milk jug and fill it maybe a fourth full with water and transfer from hand to had as you pace putting your arms from center to straight out from your sides (or as close as you can get). Start low and raise your arms as you go until you are able to do it straight out. Then add more to the jug until its full on subsequent "trips" it will take a while. You will be amazed at how much mobility you will get over time. If you play a relaxation track through head phones as you go, it helps. I also promise myself the heating pad as a reward when I'm done and go back to bed. i always sleep well after a nocturnal hike as my wife calls it.
Part of the reason this works so well is that as we normally sleep we start to stiffen up (and takes a good while in the morning for it to go away) that stiffening interrupts our sleep. It is also one of key symptoms most rheumies track. I actually know some folks who set their alarm to do a mid night hike to avoid that stiffness. Its also a great pre-bedtime routine.
Some days I can do that--other days I can't. At times I have no strength in my hands to grip anything. I do force myself to move around more to loosen up some of the stiffness even through the pain. It takes all day to put dishes away --in upper cabinets some days. My treadmill stopped working but I hope to get another one so I can start a routine exercise plan and the milk jug is a good idea when I can grip it. I just have to get back in to see the rheumatologist for medication changes and try something else as what I am doing is not working., I am just trying to survive until then.
Lamb, I'm going to try this during the day. Two weeks ago at hydro the physio quarter filled two four pint plastic milk bottles with pool water and had me doing a couple of different lifts with them. It was too much for my right shoulder and started a nasty painful two weeks, especially at night. Today she let me off any "weight lifting" but told me that I would have to get back to it. This is something I can be doing at home in between sessions and see if I can build up my strength. Thank you.
So, Moxie, try anything that maybe has a closed loop handle that you can hang off your fingers rather than grip.
tntlamb said:
Moxie I'm not being a smart ass I promise. As you are pacing at night (and I have been there) take a milk jug and fill it maybe a fourth full with water and transfer from hand to had as you pace putting your arms from center to straight out from your sides (or as close as you can get). Start low and raise your arms as you go until you are able to do it straight out. Then add more to the jug until its full on subsequent "trips" it will take a while. You will be amazed at how much mobility you will get over time. If you play a relaxation track through head phones as you go, it helps. I also promise myself the heating pad as a reward when I'm done and go back to bed. i always sleep well after a nocturnal hike as my wife calls it.
Part of the reason this works so well is that as we normally sleep we start to stiffen up (and takes a good while in the morning for it to go away) that stiffening interrupts our sleep. It is also one of key symptoms most rheumies track. I actually know some folks who set their alarm to do a mid night hike to avoid that stiffness. Its also a great pre-bedtime routine.
A part of my pt was a medX machine. Its a contraption that you get strapped into and you lift weights with your neck or back. My back was like that of a 90 year old. After medX a couple years ago, it was closer to as strong as it should be for a person my age and size.
It is a constant battle when you have PsA, and it's hard not to get depressed. Keep stretching. I have had a huge reduction in stiffness since I started Enbrel just 7 weeks ago--and it was fast relief of most of my PsA symptoms. Don't fear the biologics--I'm hoping mine works a long, long time.
I'm glad you got some sleep! Good luck!
Jules said:
Lamb, I'm going to try this during the day. Two weeks ago at hydro the physio quarter filled two four pint plastic milk bottles with pool water and had me doing a couple of different lifts with them. It was too much for my right shoulder and started a nasty painful two weeks, especially at night. Today she let me off any "weight lifting" but told me that I would have to get back to it. This is something I can be doing at home in between sessions and see if I can build up my strength. Thank you.
So, Moxie, try anything that maybe has a closed loop handle that you can hang off your fingers rather than grip.
tntlamb said:
Moxie I'm not being a smart ass I promise. As you are pacing at night (and I have been there) take a milk jug and fill it maybe a fourth full with water and transfer from hand to had as you pace putting your arms from center to straight out from your sides (or as close as you can get). Start low and raise your arms as you go until you are able to do it straight out. Then add more to the jug until its full on subsequent "trips" it will take a while. You will be amazed at how much mobility you will get over time. If you play a relaxation track through head phones as you go, it helps. I also promise myself the heating pad as a reward when I'm done and go back to bed. i always sleep well after a nocturnal hike as my wife calls it.
Part of the reason this works so well is that as we normally sleep we start to stiffen up (and takes a good while in the morning for it to go away) that stiffening interrupts our sleep. It is also one of key symptoms most rheumies track. I actually know some folks who set their alarm to do a mid night hike to avoid that stiffness. Its also a great pre-bedtime routine.
Was a good day! I only cried once --I was able to do a load of laundry, cook meals for the weekend and was able to wash my own back! The 5 hours sleep did wonders and I am able to push back the pain some. Of course I have to modify some of the things I normally do every day--like carry smaller loads of laundry, put dishes away with my left arm---as my right is more painful. Now I pray for a good night! Night everyone.
Goodnight! Hope the amitriptyline works even better this time!
Moxie said:
Was a good day! I only cried once --I was able to do a load of laundry, cook meals for the weekend and was able to wash my own back! The 5 hours sleep did wonders and I am able to push back the pain some. Of course I have to modify some of the things I normally do every day--like carry smaller loads of laundry, put dishes away with my left arm---as my right is more painful. Now I pray for a good night! Night everyone.
OK---new symptom! Cancer sores inside the mouth---anyone ever have this too? I am taking celebrex and have for a few months so I don't think it is from the meds. Any ideas?