Pain

General Support
1

Hello everyone,

thank you for the warm welcome

Sorry If I keep putting this post in the wrong area. Very new to site.

  • I need advise for pain, as I'm sure a lot of people do. I am not sure if I am typing this in the correct location but anyway. Ever morning when I wake up I am unable to walk due to pain I was hoping someone would be able to advise on what pain medication they use to help them get out of bed.
  • I am currently taking targin twice a day, Panadine forte, nerofen, Panadol esteo, started metoblastin, on amitriptyline for my back, what else can I take. I usually take at 6am Panadol and nerofen, nerofen at 10 am and by 12 noon I can move without serve pain. What do people do? Can you go back to work? like a lot of people on here I am an RN as well and this has just hit me out of the blue one day I was unable to walk due to serve pain and psoriasis arthritis is what I have been diagnosed with, You go and tell a doctor that you are in 10/10 pain and cannot walk and I don't know if its because they don't believe you or what but the care is not there. I Don't know anymore How are people living with this?
2

Hi Trishey! Welcome to the group! I see that you are taking quite a few meds, but I'm not familiar with a lot of them. What I don't see are any disease modifying meds. If you are not taking any DMARDs, then you are treating symptoms, not the disease. These take time to work, but are necessary to slow down progress.

I just realized, I think you have typos. Are you taking methotrexate? Then yes, this will take time to work, but you might start noticing less morning pain and stiffness over the course of the next 4-6 weeks, but it takes time to really work. You may need to add in further meds, possibly a biologic.

3

Hi Stoney; yes sorry taking methotrexate just started it two weeks ago. I have never felt pain like this before it is even worse than when I had my back operated on. I really hope methotrexate works other wise I will I ever return to work.

Thanks for your reply

Stoney said:

Hi Trishey! Welcome to the group! I see that you are taking quite a few meds, but I'm not familiar with a lot of them. What I don't see are any disease modifying meds. If you are not taking any DMARDs, then you are treating symptoms, not the disease. These take time to work, but are necessary to slow down progress.

I just realized, I think you have typos. Are you taking methotrexate? Then yes, this will take time to work, but you might start noticing less morning pain and stiffness over the course of the next 4-6 weeks, but it takes time to really work. You may need to add in further meds, possibly a biologic.

4

I don't think there is much left for you to take.

Please tell me the three forms of tylenol, 2 forms of ibuprofin and 2 forms of narcotics are not all being prescribed.............. Granted prescribing rules are different in the US than Aus.and you have some "good stuff" available OTC but livers are the same the world over. Several of the meds are strongly contraindicated with the methotrexate There is no way you can be getting much benefit from any of those meds including the MTX (called Metoblastin) Your liver can't possibly process all of that. I can understand why you aren't at work. Its gonna take some real work and time to get you straightened out and moving forward. On thing treating PsA like OA doesn't usually have much effect.

5

Hey Trishey (and apologies ahead of time for such a lengthy answer--there's just so much to respond to in your message!)

Sybil and Lamb are offering really good advice here. The MTX is serious business and you can't and shouldn't be throwing over the counter (OTC) pain pills at it while also adding in prescription meds. Sybil has it right that you need to document the things you cannot do and communicate this with your Rheumy. You also need to discuss ALL the pain meds you are using (including the OTC ones) with your Doc. And you REALLY need to keep on top of your blood work. Getting regular blood tests which include a liver panel is crucial. And please remember than alcohol and MTX are a bad combo.

MTX was a slow starter for me--it took many weeks before I felt much of anything and overtime there was not much improvement. It was frustrating to feel like I was suffering on MTX but it was the consistent lack of improvement in function (how long are you stiff in the morning, can you walk 1km if you wished with no difficulty, can you tie your shoelaces with no difficulty, etc.) that got me off MTX and onto a biologic, not my pain levels.

When I was in your shoes and recently diagnosed, I also talked to my doctor about the importance of staying in work. I am lucky to have a job where I can work from home if needed, and I had to take advantage of that a little more than I wanted (office culture is important--as is being seen to "show up"). And when I was showing little functional improvement and I could also document the few hours I was able to be at work rather than at home, it was those things and not how much pain I had that got the process moving to the next level. (Nsaids, then DMARDs, then biologics).

Document your pain. Make a chart. Note when it is worse and when it is better. See what kinds of things make it feel better or worse. Try movements and stretches. Try swimming. Try a hot tub. Try a heating pad (everyone loves a heating pad). Or try ice (personally hate it but it works magic for tendon insertion (enthesitis) swelling). But make careful notes of what helps.

Similarly try to describe the pain you are feeling. I'm learning that not all pain feels the same. And being able to differentiate that deep inner joint pain than I feel in my hips from the surface pain of a swollen hip bursa to the pins and needles of overactive nerves in my swollen fingers and toes...it becomes its own language over time. I know right now it just seems like a crushing weight and a confusion of emotion and pain and coping, but try as best you can to tease apart the pieces and to lay them out with as much objectivity as you can muster. And talk to your doctor about it all.

Here's the tough love part. When you're at the beginning of the PsA discovery process it is easy to roll your eyes at this last piece of advice, but it is absolutely true: Try putting shoes and going for a walk. Or put on your swim suit and go flop around in a pool. But do SOMETHING to move your body. Exercise is a MUCH more efficient way to relieve pain than hitting the pain meds. I know it doesn't feel that way right now, but you MUST get moving.

6

Hi Trishey47--My guess is that you as a nurse can add up the tylenol that you are taking and stay well within the recommended doses and if your doctor is any good then he/she is checking liver functions regularly. If you are not gettings labs done frequently-then that is a sign of poor medical care. If your doctor is unsympathetic to your pain then that is also a bad sign. I agree that your doctor should consider a biologic/DMARD. I am going to try to quote/paraphrase something from the American Academy of Pain Medicine, The American Pain Society and the American Society of Addiction Medicine 2001.

Addicts take drugs to get high and avoid life/Pain patients take drugs to function normally and get on with life.

Best Wishes--Janice RN

7

Janice, you may well be right that "Addicts take drugs to get high and avoid life/Pain patients take drugs to function normally and get on with life." but unfortunately it seems that Trishey, here, is taking plenty of pain meds and yet she is still not able to function fully and get on with life. So, again, you're right, there's likely a need for some other kind of interventions and better disease control. Perhaps with the addition of a DMARD or Biologic Trishey can move away from being a pain patient and back to a functional PsA patient.



jhelvey said:

Hi Trishey47--My guess is that you as a nurse can add up the tylenol that you are taking and stay well within the recommended doses and if your doctor is any good then he/she is checking liver functions regularly. If you are not gettings labs done frequently-then that is a sign of poor medical care. If your doctor is unsympathetic to your pain then that is also a bad sign. I agree that your doctor should consider a biologic/DMARD. I am going to try to quote/paraphrase something from the American Academy of Pain Medicine, The American Pain Society and the American Society of Addiction Medicine 2001.

Addicts take drugs to get high and avoid life/Pain patients take drugs to function normally and get on with life.

Best Wishes--Janice RN

8

That was great article. many of the parts are often repeated so I'm not sure it can be attributed to a single author anymore. I'm very familiar with it. It came from a guy who of all things came through a very long period of pain management for chronic back pain and ultimatley, when he could no longer perform surgery, ended up in what today is called "pain rehab" and later went on to be diagnosed with PsA That one statement was one of a list (also a list that fails to distinguish a larger program of created dependency which has lead to massive changes in pain management practices the past few years although the pill mills still exist) :

The author started with: Some behaviors that may be suggestive of possible addiction include:
Taking medications more frequently or at higher dosages than prescribed.
Frequent reports of lost or stolen prescriptions.
Doctor shopping.
Using multiple pharmacies.

And then added this list

Following are some of the key differences between addicts and pain patients:

Addicts take drugs to get high and avoid life Pain patients take drugs to function normally and get on with life.

Addicts isolate themselves and become lost to their families. Pain patients become active members of their families.

Addicts are unable to interact appropriately with society. Pain patients interact with and make positive contributions to society.

Addicts are eventually unable to hold down a job. Pain patients are often able to go back to work.

The life on an addict is a continuous downward spiral. Pain patients lives progresses in a positive, upward direction.

Its now a part of a lecture given to everyone of groups new residents every year, and the author no longer active in practice, but rather teaching and involved in research is pretty proud of his connection to Pain Management Program at the University of Washington which has nearly 90% of its "graduates" functioning without the use of any opiates and boast nearly an 80% success (graduation) rate.

BUT I am curious Janice, why would addiction come first to your mind, as opposed to the first thoughts everyone else had, which was that Trishey was woefully and tragically being under/poorly treated?? No one should ever be in the position she is in.We have yet to EVER have a new member yet whos first questions were about pain meds/treatment that was being properly treated for their disease. NOT ONE.

I think its pretty common knowledge by now that pain medications have little effect on the progress of this disease and certainly NO effect on pain sources and in fact often exacerbate the pain. That's why most modern Rheumies simply will not use them and will only refer patients to pain rehab only after everything else has failed. It takes a while for "newbies" to learn that.

Far to often PCPs in the spirit of compassion have started patients down the wrong road. Their training to the point they are at has taught them as it has Nurses an other associated staff their primary job is stabilization, so that treatment can be carried out through other modalties and referrals by specialists. Unfortunately analgesia and stabilization is NOT treatment


jhelvey said:

...Addicts take drugs to get high and avoid life/Pain patients take drugs to function normally and get on with life.

Best Wishes--Janice RN

9

How are we living? Some better than others, to be honest! :wink:
I take two pain meds, ibuprofen, and Lyrica to get moving in the morning, but I’m also on MTX and Remicade. I can’t function without the last two. Though I do take pain meds, they really don’t work on their own. If I have to stop Remicade or MTX for any reason, I am miserable. My function is also really dependent on Lyrica. If I don’t have it, my pain skyrockets. I always think of this as a really delicate balancing act.

It’s tough to get a lot of sympathy out of the Rheumatologists. I wonder, often, if they just don’t realize how much PsA hurts. I feel like they treat it like OA: “just take this NSAID, this bio, and you’ll be right as rain”, but for a lot of people it isn’t like that. It takes a while for dmards, bios, and the antidepressants, or anti seizure medications to work. Until then, you just have to find things that help. I depended on warm baths, PT, and my heating pads and blankets. It was a real struggle. It also takes time to find just the right medicàtions for each person. Trust me. The opiates don’t help that much for the pain. You can take a lot of different things and still not get the relief that you will have when your condition is well managed with an NSAID, DMARD and a biologic (if appropriate).
I wish I had more soothing words, but I don’t. I can state that most of us get better and are able to go to work. Even ones that started out in as much pain as you are describing now…those people got better. In the beginning, I was so bad that we were looking at wheelchairs and other assistive devices. After my meds started to work, so did I and I was so relieved. It gets better.

10

Thank you for finishing the quote and the rest of the info. That is something that I did not know. I copied it from it from the American Society of Pain Med-I think-years ago. Some of the post sounded very critical of the medicine that this lady is taking. Please forgive me--I did not want to imply that that Trishey is an addict---I wanted to support her in a time of crisis and perhaps by sharing that quote with her- it would do the same thing that it does for me--gives me encouragement when I am down and helps me deal with the fact that this is something-PSA and pain- that I have to actively work on every day and do what I need to do and take what I need to take.. I'm not a newbie and I totally agree that treatment is more than analgesia.

tntlamb said:

That was great article. many of the parts are often repeated so I'm not sure it can be attributed to a single author anymore. I'm very familiar with it. It came from a guy who of all things came through a very long period of pain management for chronic back pain and ultimatley, when he could no longer perform surgery, ended up in what today is called "pain rehab" and later went on to be diagnosed with PsA That one statement was one of a list (also a list that fails to distinguish a larger program of created dependency which has lead to massive changes in pain management practices the past few years although the pill mills still exist) :

The author started with: Some behaviors that may be suggestive of possible addiction include:
Taking medications more frequently or at higher dosages than prescribed.
Frequent reports of lost or stolen prescriptions.
Doctor shopping.
Using multiple pharmacies.

And then added this list

Following are some of the key differences between addicts and pain patients:

Addicts take drugs to get high and avoid life Pain patients take drugs to function normally and get on with life.

Addicts isolate themselves and become lost to their families. Pain patients become active members of their families.

Addicts are unable to interact appropriately with society. Pain patients interact with and make positive contributions to society.

Addicts are eventually unable to hold down a job. Pain patients are often able to go back to work.

The life on an addict is a continuous downward spiral. Pain patients lives progresses in a positive, upward direction.

Its now a part of a lecture given to everyone of groups new residents every year, and the author no longer active in practice, but rather teaching and involved in research is pretty proud of his connection to Pain Management Program at the University of Washington which has nearly 80% of its "graduates" functioning without the use of any opiates and boast nearly an 80% success rate.

BUT I am curious Janice, why would addiction come first to your mind, as opposed to the first thoughts everyone else had, which was that Trishey was woefully and tragically being under/poorly treated?? No one should ever be in the position she is in.We have yet to EVER have a new member yet whos first questions were about pain meds/treatment that was being properly treated for their disease. NOT ONE.

I think its pretty common knowledge by now that pain medications have little effect on the progress of this disease and certainly NO effect on pain sources and in fact often exacerbate the pain. That's why most modern Rheumies simply will not use them and will only refer patients to pain rehab only after everything else has failed. It takes a while for "newbies" to learn that.

Far to often PCPs in the spirit of compassion have started patients down the wrong road. Their training to the point they are at has taught them as it has Nurses an other associated staff their primary job is stabilization, so that treatment can be carried out through other modalties and referrals by specialists. Unfortunately analgesia and stabilization is NOT treatment


jhelvey said:

...Addicts take drugs to get high and avoid life/Pain patients take drugs to function normally and get on with life.

Best Wishes--Janice RN

11

Trishey and group--I am sorry if what I posted sounded like I was comparing Trishey to an addict. That was my not my intention. The quote has helped me when I needed to take pain medicine. It reminds me that I am not a drug seeker-doctor shopper-criminal.

12

I was critical of the meds. I ' sorry janice if it sounded I was critical Trishey of using them. (I am concerned0

Seriously how pathetic is it that Targin which is a super expensive form of Oxycodone (has stuff in it to prevent constipation) arguably one of the most powerful oral pain medication available right now is being supplemented with Tylenol 3's and additional NSAIDs? AND LITTLE OR NO RELIEF??? Not one arthritis (PsA) medication is in the mix no DMARDS, no Bio's, no steroids (and most of you know what I think of steroids) No anti-convulsants, etc etc. Hard not to be critical, Trishey deserves better..

I don't use many fluff words, something I'm too old to change............ bare with me.

13


Trishey does deserve better--you are right. Your delivery is not very fluffy and I am sensitive.
tntlamb said:

I was critical of the meds. I ' sorry janice if it sounded I was critical Trishey of using them. (I am concerned0

Seriously how pathetic is it that Targin which is a super expensive form of Oxycodone (has stuff in it to prevent constipation) arguably one of the most powerful oral pain medication available right now is being supplemented with Tylenol 3's and additional NSAIDs? AND LITTLE OR NO RELIEF??? Not one arthritis (PsA) medication is in the mix no DMARDS, no Bio's, no steroids (and most of you know what I think of steroids) No anti-convulsants, etc etc. Hard not to be critical, Trishey deserves better..

I don't use many fluff words, something I'm too old to change............ bare with me.

14

Well didn't expect some of the reply's I have been given. Yes I am on a lot of medication but I am a person who has been working flat out putting up with pain then suddenly unable to weight bear and wheel chair ridden and I don't believe I am seeking drugs last time I looked. This pain is bring me to tears everyone. My post was to ask for advice on how to control or help with the pain or find out what other people do to manage there pain. Some one mention doing exercise as this helps. Hello I am unable to get out of bed until about lunchtime every day as I am unable to weight bear as the pain is so serve. Now I am talking about crying every time I move my husband lifting my legs as I am not able too. I joined for support not for people to think I am a drug seeker. So I think this will be my last post and will try somewhere else.

15

Hi trishey47, I hope beyond hope that you do stay with us because we can all help to support you through this difficult time. Pretty much every one of us has laid there in bed in such unbelievable pain at one or more times. When it was me I couldn't believe that my doctors didn't have a analgesic drug in their armoury that would take away my pain and make me feel well again .... and I raved and ranted at them and the world for leaving me to suffer. It must be so much harder for you as you're the one used to helping make others better, your own illness adding frustration to the mix because you're struggling to help yourself. I totally get this.

As everyone else has said it is getting onto an effective treatment regime to tackle the underlying disease that ultimately gets to grip with your pain and mobility. Methotrexate is normally the first DMARD of choice the world over, for some people it is a wonder drug for others it's effect is very limited or ineffective. Unfortunately whether you are on a single DMARD or combination of DMARDS none of them work instantly, it takes weeks if not months. Same if your treatment is escalated to include a biologic, it can take a while to see its full effect. I think the best way I can describe my own treatment journey is as a marathon rather than a sprint.

One of our mods on here, Jen, also lives in Australia. I think she's travelling on business at the moment but I'm sure when she catches up with these posts there may well be some insights from her on how the treatment plan works in Australia. This may well help you get your progress speeded up.

In the meantime I send you the warmest wishes. I've also attached a body map that I use to mark up/make notes that I take to my rheumy to show him what is going on for me. As others have said I find I get the best outcomes from my consultations when I relate my disease to specific functional issues.

189-BodyMap.jpg (65.2 KB)
16

Trishey, nobody accused you of anything, but did take a lot of time to offer you support and opinions based on their experience with PsA. One person with an axe to grind accused everbody else of gosh only knows what, shes done it before, and won't in the future. Its obvious that a combination of OTC NSAISDs and opiates is not working for you. Different opiates and NSAIDs won't make much difference either. Lots of us have been in very bad places and almost without exception will tell you they won't.

Yes movement is key, it takes some to get there. With PsA, what doesn't move rusts - very quickly.If your lack of effective treatment has indeed totally debilitated you (sometimes the normal depression that comes with this disease does it to along with massively increasing pain levels does it too) then you may need to start over. That usually involves coming off of most of the opiates a course of Torodol for pain management and a big steroid taper (I prefer injectible Methylprednisolone as its 20% - 30% stronger with fewer side effects) You start PT immediately if only for evaluation. As things calm down a systemic NSAID and possibly a DMARD can be started. As you likely know Biologics are hard to come by for a while in AUS

If you are as messed up as you say, call Dr. peter Courtney. He was at the Royal Melbourne Hospital but may be full time at the Melbourne Pain Group. I knew him way back when he was doing his residency at Oregon Health Sciences (University of Oregon) We have met a few time since. Super clinician. I don't know that he is warm and fuzzy.

He has done a ton of work with interventional techniques in the treatment of neuropathic pain conditions and visceral pain, treatment of mechanical back pain which might be right up your alley. He has published a fair amount on the use of use of ketamine to reset the pain centers. As recent research has shown chronic pain diseases are exacerbated by opiates.

Good luck.

17

I hope you understand that I HEAR you. Exactly where you are, everything you are going through: the pain, the tears, all of it…I get it. I have indeed been there. Hell, I’m back there now since I am off of my medications for an upcoming surgery. Most of us have been there. It can get better, but you must see someone because you can’t do it alone. I don’t know how things are managed in your country, but here, our fist stop is with a general practitioner, then on to a rheumatologist, but this is the process that you need to follow to get the drugs that will really help.the short term solutions don’t slow the progression of the disease. In order to get rid of this teeth-clenching pain, you must have better disease control in order to get better pain control. I promise that it gets better and that there are days ahead of you that you will be able to get out of bed in less or no pain, but you have to get started somewhere. You won’t be able to get a whole lot of help out of your GP for pain meds, or a rheumatologist for that matter, until you have tried to get the disease managed. The pain is related to inflammation, and the drugs we take help control that.

In the beginning, during that first flare, there isn’t a whole lot anyone can do. Prednisone, an NSAID and maybe a mild opiate can help but you need the first two the most. Since prednisone and opiates are a short term solution, you have got to see a rheumatologist, STAT.

PsA sucks. There is no way around that, But your life can be better than this, if you are determined that it will be. You will find little things that do really help and medications that provide relief, and slowly, but surely, you will get your life back. :slight_smile:

I don’t know if prednisone is available without a prescription in your country, but if it is, please talk to your doctor before taking it. Let your GP get you started and then the rheum can make adjustments as needed. Also, it may take a while to find the right NSAID that will work the best for you. I remember trying a different one every 2-3 weeks until I landed back with ibuprofen.



trishey47 said:

Well didn’t expect some of the reply’s I have been given. Yes I am on a lot of medication but I am a person who has been working flat out putting up with pain then suddenly unable to weight bear and wheel chair ridden and I don’t believe I am seeking drugs last time I looked. This pain is bring me to tears everyone. My post was to ask for advice on how to control or help with the pain or find out what other people do to manage there pain. Some one mention doing exercise as this helps. Hello I am unable to get out of bed until about lunchtime every day as I am unable to weight bear as the pain is so serve. Now I am talking about crying every time I move my husband lifting my legs as I am not able too. I joined for support not for people to think I am a drug seeker. So I think this will be my last post and will try somewhere else.

18

Also, NO ONE thinks you are a drug seeker. Not a single one of us. We are worried about you and want to help you get some good care, good meds, and good relief. My heart is heavy for you. :-/

19

GrumpyCat thank you.

I have seen a rheumatologist I am on prednisone but to take it through out the day as this might help me better than all at once, and I must admit today I have been able to function which has made me happy. I am also on methotrexate which I am to believe will take a few weeks to work. I'm to start Morbic ( anti-inflammatory) and to take panadine forte for pain. He also said to remain on targin until everything started to work then reduce targin and finally to stop taking it.

20

Thank you for your advise.



tntlamb said:

Trishey, nobody accused you of anything, but did take a lot of time to offer you support and opinions based on their experience with PsA. One person with an axe to grind accused everbody else of gosh only knows what, shes done it before, and won't in the future. Its obvious that a combination of OTC NSAISDs and opiates is not working for you. Different opiates and NSAIDs won't make much difference either. Lots of us have been in very bad places and almost without exception will tell you they won't.

Yes movement is key, it takes some to get there. With PsA, what doesn't move rusts - very quickly.If your lack of effective treatment has indeed totally debilitated you (sometimes the normal depression that comes with this disease does it to along with massively increasing pain levels does it too) then you may need to start over. That usually involves coming off of most of the opiates a course of Torodol for pain management and a big steroid taper (I prefer injectible Methylprednisolone as its 20% - 30% stronger with fewer side effects) You start PT immediately if only for evaluation. As things calm down a systemic NSAID and possibly a DMARD can be started. As you likely know Biologics are hard to come by for a while in AUS

If you are as messed up as you say, call Dr. peter Courtney. He was at the Royal Melbourne Hospital but may be full time at the Melbourne Pain Group. I knew him way back when he was doing his residency at Oregon Health Sciences (University of Oregon) We have met a few time since. Super clinician. I don't know that he is warm and fuzzy.

He has done a ton of work with interventional techniques in the treatment of neuropathic pain conditions and visceral pain, treatment of mechanical back pain which might be right up your alley. He has published a fair amount on the use of use of ketamine to reset the pain centers. As recent research has shown chronic pain diseases are exacerbated by opiates.

Good luck.