I need a real reason to keep fighting

[Kmwestmo]

I have been suffering from PsA for 5 years now. I did everything I was supposed to do. Diet, exercise, medications, meditation, therapy, physical therapy. I saw a pain specialist who did millions of injections but since it is in every joint, I was still in major pain all the time. then a neurologist to deal with the onset of fibromyalgia which my rheumy said started becasue “i was so sick and in so much pain for so long that my nervous system went insane.” Everyone i knew and loved including my family and ex husband turned on me. i am living alone in state housing becasue i am disabled and it’s all i can afford. A lot of bad people live here. I dont have a single friend. i saw one more pain doctor yesterday and he said becasue the PsA will not go away, he cant help me. he didnt want to prescribe any drugs becasue i could become addicted.

Well, at this point, i would rather be addicted to narcotics than live another second like this. it is torture and never ending. even in sleep i wake up countless times becasue my joints are being crushed by my body weight. I done so much research into anything i can think of to help. and if one more person says well it could be worse, at least you…

i am trying very hard not to be angry and have given up on trying to find meaning in any of this. i know our mind likes to find patterns to make sense of things and thats all the search for meaning is. this disease is meaningless and has destroyed my life.

it has taken everything i had to get thru the separation of husband, family and friends. i have nothing left to put toward my everyday battle with pain and limitations. i am getting old and will die one day anyway. so what is the point of living 5, 10 or more years this way then dying anyway?

i need some sort of hope that is real and medical science cannot offer it. Nor religion or philosophy. Is there anything else?

[Stoney]

I’m so sorry. If I remember correctly you’ve been through a number of medications, and as you said, you’re looking for hope.

One of the ways that we can make a difference in our own lives, is by making a difference in others lives. I hear you saying that you are in really bad shape. I will leave it up to you and your doctor to find a treatment or management that works. You may want to look into therapy as well. But what about volunteering? I know it may sound trite, but it could make a real difference. Personally I generally prefer working with animals over people, but that’s my personal preference.

In the meantime, know that we’re here for you.

[letizia]

I am so sorry to read your news, your disconcert echoes with our illness’s symptoms.The brain runs round in circles over past and present . Have started on a meat only diet to ease into a long fast to abate inflammation, as have been taken off medicines, and hoping for symptoms to improve. Do hope you will have relief soon, and please keep in touch with us, we know how you feel, an Italian writer wrote that we are all like angels without one wing, needing the help of others to fly.

All the best,

[Jen75]

I’m so sorry to hear how you feel. It’s really hard to maintain a sense of purpose, which really most of us need for a fulfilling life, if you feel like there is no hope to get better. People do though, they amaze me because I don’t find it so easy.

What I find helps me when I have those sorts of thoughts is good psychological support - I know it’s hard to get, but fight for it like your life depends on it, cause it just might

And the other thing that helps is “doing the next right thing”. It also sounds a bit trite, but just putting one foot in front of the other, doing the things that are good and healthy for yourself and those around you (which includes having good boundaries, and doing things that bring you enjoyment - or at least used to bring you enjoyment - eventually that returns), and giving yourself a pat on the back when you do, can make an enormous difference over a few weeks / months. I found a structured program online that helped me:

https://www.mentalhealthonline.org.au/pages/about-us

I also found a psychologist that specialises in health issues, and though I can’t get in until June, I’ve made the appointment, cause the health issues aren’t going anywhere and will still be a problem in June.

In the meantime, there is a link to crisis helplines at the top of this page - use it if you feel you can talk to someone. Sometimes just hearing a compassionate voice can help.

Meanwhile, know that we are here for you too

[Poo_therapy]

I’m really sad to read this and I can certainly hear all your despair. I’m 5 years into PsA coming out of nowhere and hitting me like a 10 tonne truck too. However I’m on my 5th med and this one finally is doing what it’s supposed to. I’ve also developed osteoporosis thanks to pred and have suffered 6 fractures this far. But that’s now being medicated too and seems a lot more stable thankfully.

At the time PsA hit me I was seeing a psychotherapist for other issues. Boy was that lucky frankly. It was in my view only thanks to that that I kept myself together. Because coming to terms with all this is exceptionally hard really. Your whole life it seems is suddenly taken from you plus all your dreams and hopes and you have to sort of start again but with a fragile and very volatile capacity, that can be manageable one day and have you bed ridden and in tears of pain the next day.

However I still work full time too. My job is in effect helping other people as I make legally binding decisions on consumer complaints about financial services. So I right wrongs to include weeding out fraudsters too.It’s good to make a difference to other people’s lives. Really good. I also spent huge tracts of my spare time helping other people with inflammatory arthtitis here in the UK where our medical system is somewhat unique. So a bit like what @Stoney said I look outwards, it stops me ruminating about myself and gives me a sense of purpose. I may be recovering from yet another fracture sitting on my sofa or in between PsA meds waiting for one of them to damn well work but I can still help someone else access decent medical care or get their doctors to actually understand PsA better. That helps an awful lot.

Oddly though I actually prefer animals and nature to many people. Most of my peace comes from being in the company of my dog, petting someone else’s cat (since mine died) feeding the birds outside my back door, or taking my dog for a walk in a nature reserve where there is all sorts to see include the grazing cattle and ponies. These days I can actually walk him too, previously I would hobble to the nearest open space and simply throw a ball for him instead. Being outdoors helps me a lot too, Just sitting on a bench or a log and watching nature calms me so much. And now with Covid I’ve taken up painting by numbers (adult ones) usually making photos into them and spending hours painting them up. I’ve even started to get friends to send me their favourite picture of whatever and then I get that picture made into a painting and I paint it for them. I adore doing it and they adore (hopefully) receiving a painting. Again you see I look outwards even there. It stops me thinking about me too much. What I’ve lost, what I’m missing and what I may be grieving having to endure having PsA for the rest of my life.

The best advice I can give you is to simply focus for now on getting psychological help. That gives you the stepping stones to getting better other help, That helps you to break down your problems and sort them out one by one. That gives you back you to sort of march forward with. We can’t really do all that on our own. Having an objective professional guiding us and picking us when we fall truly does help. An awful lot. However it’s only us who can decide to access that help and it’s only us who can decide to actively engage in it. It’s hard work believe me and it’s painful emotionally but by golly do you then have the tools to deal with life so much better. You’ve actually made the first step by writing all this down and showing us. The first step is also always the biggest step. So now as @Jen75 said take the next step (as that is all we can do, put one foot in front of the other) and go and get some help.

@letizia

we are all like angels without one wing, needing the help of others to fly.

This is just so true. It doesn’t matter what our issues are, issues are always just relative but every single one of us needs the help of other to fly. So go find your help to help you.

[tntlamb]

I’m sorry your pain doc didn’t explain things well. The danger is NOT addiction, but rather dependence and they are two entirely different things. Because of the dependence factor the narco’s will ultimately make your pain worse - much worse. Hyperalgesia is often confused for Fibro. Phisiologically they really aren’t much different. medications DMARD and Biologicals will help most though getting the right combo is time consuming and touchy. There is much one can do for themselves in the meantime. For fibro and PsA the only effective treatment beyond medications which are designed to prevent progression (not reverse it) is self help. Psychological and Psychiatric help, is first. Autoimmune diseases suppress the the formation of endorphins. Somehow you need to replace those endorphins. It can be medication (either antidepressants or Anti convulsents or (both) Aerobic exercise is prolly the most effective. PT can can build and expand a program.

In women female hormones get out of wack and mess everything up. HRT from your gyno helps.

Diet helps anti inflammatory foods but especially cutting carbs. A weight loss of 10 pounds will take 40 pounds off your joints. More is better (no matter your weight)

Motion is lotion. You need to keep every joint in your body moving every day. A warm shower/bath will get things loosened up first thing in the morning and if you keep moving will stay that way. Stretching is even more critical. Its the only thing that will control enthesitis. No pill can easy the tightening and spasms.Think of the tin man in the Wizard of OZ.

Along with motion, being upright is critical so that blood flow goes to your lower body efficiently. Laying down will increase pain levels consistently. A recliner of nothing else.

Your PM Doc was right PsA won’t go away and there is no meds that can make. Inflammation is a fact of life even in the most active careers. Two of my kiddos were pro Athletes On NFL and the other Womens Tennis. They spent MORE time controlling inflammation than on their sport (My son in a trough of ice) They never complained until AFTER they retired. Both have commented since their playing days that they had forgotten what it was like to be out of pain… Activity pays dividends.

@Stoney is right, once you are busy looking out you don’t have much time to look in. We get where you are at ALL of us have been where you are ALL. The most important thing to remember is that those of us who seem to have it together and our disease controlled aren’t as well off as you think. We have good days, bad days and IF we think about it some terrible horrible days where we could let our “pain” drive us to bed and isolate from everyone and everything. We don’t. We have learned as you are (and trust me @Kmwestmo you have more progress than you make think) the answers are not in magic syringe or bottle of pills. The first step is learning we define our lives (not our disease) and we are not defined by our disease. We have PsA, but PsA doesn’t have us. When we take control from the disease somehow the pain goes away, and if it hasn’t gone away, it doesn’t seem to matter as much.

[Kmwestmo]

Thank you all for giving me some of that hope I was looking for. It is true that unless you have PsA, you cannot ever understand. i am very grateful to be a part of this community and am taking into account everything you all said.

[Amos]

You will come out of this pit. It sounds like a lot of things have created much on going stress in your life and stress is no friend of PsA. And when finances are in short supply, things can seem impossible. But you don’t need money to follow some of the good advice that has been given to you. I agree that volunteering is good for you and others. Perhaps you can find an arthritis support group to join? Your today’s low spot might just set you up to be a shoulder to another ‘cuz you can identify with their pain. Our condition can cause us to become “navel gazers” and occupy all of out thoughts…and that isn’t healthy. I hope you can find a good friend who can be honest and kind with you. Also, the medical profession can get discouraged when they run out of answers…they love success stories as much as any of us and when a difficult case like yours comes along, they too are exhausted. Maybe a fresh set of eyes and hands might help? Hang in, and if there are any self induced “ruts” that are bringing you down, identify them and enjoy the change! Peace.

[tamac]

@tntlamb

Could you elaborate on how pain meds make the pain worse? I know a little about that, but could use some references. Thanks.

[tntlamb]

Opioid-induced hyperalgesia (OIH) a patient receiving opioids for the treatment of pain could actually become more sensitive to certain painful stimuli. It has been discovered in as little as 7 days… Heres a pretty good paper (its older and mmore has been learned since)A comprehensive review of opioid-induced hyperalgesia - PubMed. Hyperalgesia is amplified pain; processes in the nervous system work to increase the intensity of the pain you feel. Allodynia is pain that’s caused by something that isn’t normally painful, such as a light touch or fabric moving across your skin. Mechanical Allodynia , very common with Fibro myalgia (as well as diabetes and forms of arthritis), is related. In these instances it has been discovered that in addition to neuralgia, opiod (both synthetic actual opiates) interfere with your sodium channels causing exterem pain even to light touch. There are new meds under development based on success with Rufinamide.

The whole situation more or less defines the difference between addiction and dependence. When the body adapts to the level of pain medication, the normal response is to increase the levels of medication. The cycle unfortunately repeats and repeats thus “dependence” ultimately leading to different and stronger meds. We we have a “Pill Mill” doc just south of us reporting to Federal Prison on Wednesday who was of the old school who believed dependence and/or addiction when treating pain with Narcos was impossible/myth. he fought hard - too hard A judge who had been effect by his “way” sentence him to 200 consecutive 40 year sentences for illegal prescribing and 6 40-life sentences for mitigated homicide. People came from all 50 states to his clinic because the “were being denied” pain control by an out of wack medical system.

Whether or not things have gotten out of hand is a matter of debate. On my first shoulder replacement I was off pain meds within 48 hours and in a sling. I though they were crazy UNTIL my second replacement where my last dose was in the Recovery room. IV NSAIDs and Tylenol was it. (not to mention smiling PT waiting for me in my room upon my return fro the Recovery Room) and NO sling I hesitate to point out recovery was weeks faster AND less painful with approach 2. My neice had approach 2 with her last knee replacement

[Sun_Worshiper]

Hi Kmwestmo,
Your post inspired me to log in and “read all”. I get emails from this site and only read the highlights. I actually have not logged in since 2011. Yep, 2011. But your post, ugg. Found my password after about 30 minutes of trying. I really wanted to say hello to you. Tell you how much I understand you.
I have been living with PSA and mutilans for over 20 years. The keyword in that sentence is “living”. I don’t want to just exist. Like you said, “getting old and dying anyway”… For what seems like most of my life I have said to myself, and out loud to many, that when the day comes that I just exist, put me down, please! I think the worst part of our disease is just not having any control over our lives. Being told what our income is, where to live, what appointments to get to, what medications to take, what to eat, not to eat, I could go on and on.

I don’t need to list it out but as you can imagine, in all my years of suffering, I’ve been on every drug, I’ve done everything they’ve told me to do. I’ve been on 100% government assistance.

I have a story like all of us do.

But here’s my new story.

In 2010 after many years of knowing (according to doctors), that I had an assisted living facility and long-term care to look forward to, I would rather not live. Once I came to terms with that I realized, living and existing were entirely different things. I realized I didn’t want to just exist, I wanted to LIVE.

My circumstances were very similar to yours Kmwestmo. This disease destroyed my life. My life wasn’t mine anymore. It belonged to the doctors. Medi-Cal (free health insurance).The government.

I got a passport.
I got as much money as I could get my hands on.
I bought a used laptop.
I got on a plane and moved to Mexico.

Scary right? The few people left in my life thought I went insane.

Part of my courage came from the thought, “I’d rather die making my own idiotic mistakes than let this disease do it. At least I will feel I had some control.”

It’s 2021.
I live in Mexico.
I’m 53 years old.
I’m single and have a dog.
I work online doing a business that I created (social media strategy for businesses).
I don’t make much money but my living expenses total is about 500 USD a month.
Methotrexate is an over-the-counter medication (I take 20mg weekly but sometimes skip a week to enjoy a margarita).
I have no specialists. Or even a regular doctor really.
I go to a 35 peso doctor every 6 weeks or so for a lab slip, (the lab is about 250 pesos) to get my panels done which he then reads back to me. I’ve learned how much milk thistle, fish oil, turmeric, etc to take.

I am still covered in scabs. I have sausage fingers. My nails are like croutons and painful. There are many days I can not walk.
But, even on the bad days, I find time to help my community online. Whether it’s helping promote our local spay and neuter clinic, a fundraiser for someone in need, or a local band performing for tips only, I can find something to do online to help which makes me feel like I am living and a positive contributor to my community.

Okay so, moving away from my doctors and specialists- Dangerous, outrageous, stupid… What I have done, what I am doing, how I live, is definitely not for everyone. So this is not “advise”, just my story.

I don’t want my story to make you sad, frustrated, envious. I want you to feel hope, inspiration, and that there is a chance, however remote, that you will have your own new story.

I knew I would never be cured. I know I will never be in full remission.
When I was ready to throw in the towel I got on a plane. I had no idea how long it would last but…
For almost 11 years I’ve been throwing my towel onto a sandy beach in Mexico.

Please keep fighting. It’s worth it.

[oldie]

Quoting from an online source: "

But what many people don’t know is that if you use opioid pills for 4 or more weeks, it makes you more sensitive to pain and that makes the pain worse.

Opioids do provide relief by blocking pain. But then, your body reacts by increasing the number of receptors to try to get the pain signal through again. So when the drug wears off, a person will experience more pain for about three days. If they continue to take opioids, the pills become less and less effective. The pain keeps increasing not because of an injury, but due to the opioids themselves.

In addition, our bodies have natural opioids called endorphins. If your body becomes used to opioid pain medication, its ability to create and use natural endorphins will decrease. This makes you lose the ability to reduce pain on your own.

[Kmwestmo]

Wow! Thank you so much for caring enough to share (and read the whole thread!)

I am truly inspired by your story. My dream is to run off to India one day

I really think we are all extreme badasses. I always say to people that they wouldn’t last 5 minutes in my body. They would go running to the hospital crying and thinking they were dying! But we warriors live this way every day. We don’t have a choice. I always said I need a vacation from myself. But I cannot get outside my body. Where I go, body comes with

As far as them not knowing what causes PsA other than it seems to be environmentally related, I realized I can only do so much to change and cleanse my outside environment. I have more control over what I consume through eating, seeing, hearing, smelling and feeling including what I absorb through my skin. All the chemicals in foods and personal care products add up over time. There is something coming into our system our body does not like. So I eliminate as many foreign substances as possible.

The reason I want to go to India is because it is where Ayurveda was invented. Ayurveda is the ancient system of wisdom for health and happiness. The main tenats are living in tune with nature and treating the person as a whole being comprised of interrelated and interconnected systems and they even if two people have the same disease, the treatment may be different because each person is so unique.

So to all of you who are still here battling and fighting on every day, I wish you health and happiness. With pluck, grit and moxy, we get up every day knowing there are challenges we must face and we still get up. That is some major cojones!

[Sun_Worshiper]

You rock!

[Stoney]

That’s amazing! Good for you! As you said, not necessarily perfect, but you’re living, enjoying your life, and giving back to others.

[Amos]

Good for you @Sun_Worshiper! Ultimately we pursue what we want and sometimes get there or find a way of accepting what is less than ideal. I guess if I were you I would be wondering…maybe if I was on a biologic or other proven medication, I could walk more, not have sausage fingers, and relief from the psoriasis. I guess it is a trade off and you prefer your “freedom” over the possible physical benefits of being on more meds paid for by the government. Journey on…it is interesting to read of the many approaches to living with PsA!

[Sun_Worshiper]

You understand.
The freedom I received from the biologicals and specialists from my home country, the USA, including not being allowed to work to continue to qualify for government assistance and health care. You know how expensive these medications are if you pay cash, had no choice. Never could I make enough to pay for those. Over 10 years of living off/with the system. Just over 10 years now living “off the grid”. In my case, I did make the right choice for me. I had no idea what I was getting myself into but I have a social life, being surrounded by people who accept me, and I contribute to society again. I may sleep in more pain than someone on a biologic, but I sleep well knowing I am independent. The number of stresses I left behind, priceless.

[tamac]

I was really hoping for some reference to a scientific study and not more anecdotal references. I have read a lot on OIH and the determinations for it are limited, at best. Far too many of the articles on OIH are biased and link everything to potential abuse, and not scientific data. One must understand when reviewing the limited information on OIH that the potential for any drug is paradoxical. The data that usually refers to OIH cites “some” reactions, “A few” cases of OIH, or other limited references. NO large scale percentage of OIH in the study group.

The bulk of material on OIH concludes with it not being understood and then wonders off into the ills of addiction as a reason to limit opioid use. Many OIH articles conclude as follows:

“Opioid-induced hyperalgesia is a less-recognized adverse effect of chronic opioid therapy. If opioids are not helping, if the pain is worsening or the pain is becoming more diffuse, a diagnosis of opioid-induced hyperalgesia should be considered. Long-term use of opioids leads to decreased pain tolerance and increased sensitivity to pain.”

No references to a potential of the underlying condition becoming worse are mentioned. So, it must be opioid tolerance or OIH.

A conclusion of “Long-term use of opioids leads to decreased pain tolerance and increased sensitivity to pain,” is a helluva leap based on “OIH being a less-recognized effect of chronic opioid therapy.”

Why can’t there be evidence based why tolerance or OIH occurs, without having to propose 20 different theories and mechanisms?

Then there is the whole discussion of Opioid Tolerance. Most studies of tolerance start out with biased statements such as this:

“All opioids that produce analgesia also can cause tolerance, addiction and withdrawal, and all available opioids are misused.” (No bias here at all)

No facts, just bias. These same studies then descend into comparative outcomes of the use of Codeine based analgesics and the tolerance cocaine, heroin, and methadone users develop as justification to limit analgesics such as Oxycodone. Or they make the assumption that tolerance from Oxycodone is comparative in scale to cocaine, heroin, and methadone addictions. Or, they will roll their findings under morphine tolerance which is by statements of most studies a completely different issue.

I personally would like to see scientific research based on the use of analgesics limited to codeine and derivatives that did not make conclusions based on cocaine, herion, and methodone addicts, rats, or other animals that are then extrapolated to humans.

The statement of " But then, your body reacts by increasing the number of receptors to try to get the pain signal through again," has so much limited science and study that it can not be used other than as a theory. The inherent problems with studying neuroreceptors in humans or in a petri dish is nearly impossible.

I only ask for scientific facts based on research that is not politically biased, based on addicts, “as seen in rats”, that is based on common pain analgesics. If anyone has any that has been performed in the last twenty years, please post it!

[Amos]

@tamac, You raise good points. But you likely won’t get the answers you want as society doesn’t really have a clear definition of “science”. In our Canadian winters, the government weather “experts” use science to give us the wind chill factor based on what it “feels like” outside. As if we all are wearing the same winter clothes. If I’m physically active, -20C might “feel like” only -5C. Science might be all we got and good science is hard to find. Science has many gullible followers…just look at the ever changing and contradictory science concerning our notorious C19 virus. Today’s science is assumed to be the truth and we typically believe it…until tomorrow’s science. @tamac I think you might continue in your search for answers as long as science and personal experience hold hands. But all that I have said is just a theory.

[Seenie]

@Kmwestmo

It is true that unless you have PsA, you cannot ever understand.

Well, people who don’t have it think they understand, but really understand? Naaah, probably not. Help? Of course. Empathy? Sure. But for the real deep-down-getting-it, that’s us, that’s what we are here for. And we’re glad you’re here.

Km, you mention various docs and that you’ve tried medication. Has your rheumie tried you on biologics? If so, how long ago?

Hang in there, and hang out here. We’re here for you …and you … and US! LOL

C