Your Comments Deserve a Second Read

When I put a question to my readers, I do so with confidence because I know that the answers that they provide will be sincere. Helpful. Empathetic. So when I wrote Thursday's post entitled Serious Pain, I fully expected that y'all would respond with some amazing responses to this sjoggie's comment: ".....but I know I can't endure this for 30 years."

Even with these expectations in mind, I was blown away by the stellar qualities of your suggestions; so much so that I felt that your contributions to this discussion deserve more attention than can be found in a little text box hidden away at the end of the post. Here they are again. And thank you. To quote c little in her comment below, "You guys are all so awesome. You just are."


 Sue said...
Hi Julia. She should probably be seen at a pain clinic. They may be able to help her with her pain much better than her rheumatologist. Has she looked at the Spondylitis Association of America website? They have information that may be helpful to her. My mom had 2 older cousins who had this (they were brothers) and it was very rough going for them as well. I hope she finds relief.

 Kate S said...
On the hoping for a cure part... I also have a version of spondyloarthiritis, and my rheum is prescribing doxycline. Just thought I'd mention it it case that option has not been considered yet.

As for the other aspects - pain clinic, use of alternating heat and cold to manage the most painful areas. I am dear friends with my condo's hot tub!

Consider learning meditation - for some just have a small quiet time in the day helps to break the cycle of the internal conversation of how awful you are feeling, which can provide some useful changes. 

But having rattled off a bunch of helpful tips, I don't feel that I've really addressed the difficultly of dealing with daily pain. It is hard to try again the next day when the last one was so lousy. 

I think that coping is a combination of doing whatever you can to reduce the pain, and finding reasons to keep going. I have friends and family that I care about, and they bring me pleasure. I have a number of small hobbies that I find rewarding, and I try to do them when I can. They can also be a nice distraction from pain, too. And then there are days when I'm going to be quietly on the couch watch a Netflix series, because that's all I can handle. 

 annie said...
I have something called DISH(diffuse idiopathic skeletal hyperostosis) in my spine, and spinal stenosis. I also have had herniated discs and sciatica.There is pain and stiffness along my spine, lower back and shoulders. There is calcification and some bone spurs along the spine. I've had physiotherapy, seen an osteopath, and been on medication.

I can say that I go through good phases and very bad ones, just like the sjogren's, and sometimes all at the same time. As others have suggested, see doctors at your hospital's pain clinic. They can help you with meds,some form of therapy, and where I went, there was a psychologist working with chronic pain patients. Have you tried accupuncture or some other alternative health medicine as homeopathy or naturopathy, always with your MD's knowledge of course? Nothing works perfectly, but sometimes we hit a combo that works fairly well together, between meds and other therapies.Sometimes a warm bath with some lavender epsom salts can help a little because as we know there is no cure and we must live as best we can with this. God luck.

 Anonymous said...
First of all: Dont give up hope! I have had chronic pain stemming from aggressive RA, Sjogrens, and belly pain stemming from atyical Crohns, and then gastroparesis and GI motility disorders, for the past 25 yrs,,and have been on chronic pain med management for the past 20 years.

The goal is of course, to treat the underlying illnesses, so that your pain would lessen, so keep pursuing the biologics and other meds used for the AS. and of course, other complementary therapies, such as gentle exercise/PT as you are able. 

Also, treating any other issues that increase pain is important, such as insomnia from the pain, so my rheum will use sleep meds, muscle relaxants, etc, for that purpose. Also, chronic pain chemicals can deplete serotonin levels so using antidepressants is also useful, even if you are not depressed. 

If your rheum is not comfortable managing your pain meds, then a good pain management doc could help. Not just with narcotics, but using steroid injections when indicated. Also ,i had a pain doc tell me, that they even can implant a med pump directly into the spine, to deliver the narcotic. That is lastly on my list, but its a good note, to realize there are other options. 

I have used a fentanyl patch for the last 20 yrs, and also hydrocodone for breakthrough pain. Of course my body has adapted to these meds, since i have been on them so long. The patch is a good choice, because you have constant low dose release of medication, so no peaks and valleys of pain control ....

And again, please dont give up hope..as new therapies are being developed, both for our autoimmune diseases, as well as pain treatments. 

 710.9 said...
I don't have a lot in the way of suggestions. I just wanted to say that I can relate, and I am so sorry she is going through this. 

In my 20s, I developed extraordinarily painful endometriosis. I had similar thoughts: "I don't think I can handle this for 20+ more years." 

Even now, when I have a flare in pain from my connective tissue disease, I find myself thinking "this hurts so much, and I don't know how I can continue living with it."

So, no real advice, except to be kind to yourself, and know you aren't alone.

 Angana said...
My thoughts for our friend.
What I am understanding from your letter is that you are feeling hopeless, wanting lasting relief and knowing that's not likely to happen. Helpless, imagining being in constant pain for the rest of your life, and having no idea how you'll tolerate it.

If I may, I would like to expand on what Julia has written about focusing on the present moment, and Kay S' recommendation about meditation. I have found this perspective and the practice of mindfulness very helpful. I recommend the book Full Catastrophe Living, by Jon Kabbat-Zinn, and any of his audio series of lessons. He has a wonderful one hour guided relaxation CD for people confined to bed for whatever reason, called the World of Relaxation. I have found that, over time, sometimes very subtly, my experience of pain, insomnia, and anxiety have changed and my Sjogren's symptoms are much more manageable and less "solid" and insurmountable. The increased awareness and discernment have helped me notice the variations in my moment to moment experience, appreciate moments of ease and well-being, and become curious and proactive about creating more moments of well-being. If you adopt mindfulness as a regular practice for its own sake, without judging your competence during any given session, I feel confident you will find some relief.

Another modality I have found extremely insightful and beneficial is the Feldenkrais Method of movement education. I work with a physical therapist who specializes in this method of gentle movement and touch. By exploring your body's potential and limitations for pain free, easy movement, you can learn to best nurture yourself and get the most out of your day. You can search Google to learn more. This method is an excellent complement to a mindfulness practice, as well as any pain management or PT regimen you may follow.

I do hope this will be of benefit to you and wish you ease, comfort, and contentment, to the greatest extent possible.

 Kelly said...
The combined wisdom and knowledge of Julia and her readership never fail to astonish me. Previous posts have covered the major idea that I can think of that might be of use to someone struggling in this way so I will add 2 small ideas that come to mind. 

In the mindfulness category so eloquently expressed by Angana above: if you are a person who enjoys putting pen or pencil to paper in any form you might look into Zentangle by doing a Google search for the term. Recent studies have shown it to be useful for patients with chronic pain. Anything that allows the mind to focus elsewhere could provide some small benefit. 

Also, as shallow as it sounds, when I was experiencing extreme stress and mental anguish as I cared for my mother throughout her final illness, I listened to Laugh USA, the clean comedy station on Sirius XM in my car and read P.G Wodehouse novels (Jeeves and Bertie) on my Kindle in any spare moment. Somehow, it helped. I found if I was able to laugh even a little in spite of the pain, I felt marginally better. 

My heart goes out to you.

 The Cranky Native said...
Wow, I have extreme pain also. If we were in London, you could get on heroin. Here though, we have marijuana. One of the biggest reasons this is such a good drug for pain is that it makes you think about something other than killing yourself.You don't have to smoke it, it's edible.They make pills. Watch Dr. Sanjay Guptas show he just did about the subject.

I wish I would have been more of an herb person when I went through the early pain. I went for hypnotherapy which helped a lot. Meditation with direction is how I see it.

I can't stand hot tubs anymore. That used to make me feel better. I have the cheapest best acupuncturist on the planet. He's from Bastyr University, right in my backyard.

I hear you baby, you aren't alone. Look at the response you have gotten. You don't have to live this way, life can get better I promise. All you have to do is try everything. There is something that will help. God helps me a lot but He's not for everybody. 

Your problem means a lot to me. I was at a low point. I'm only 51. I read about an elderly couple in Oregon. The husband was left to explain that the woman put a bullet into her head because she couldn't stand the pain from her neck and Sjogrens Syndrome anymore. I felt so sad and angry with her after that and I didn't even know her.

Pain has been like peeling the layers away on an onion. Once one is handled there is another layer that we find and it responds to some other way, PT, different drugs, whatever. Then there is floating pain. That's what I call it when the inflammation causes things like vertigo, or my pancreatitis to act up.

Hell girl, This is an adventure in science! Please write Julia back and tell us how you are doing, the discoveries you find okay?

 Julie said...
Though I left a lengthy comment earlier,(under the name of "anonymous"), one of the other respondents jogged my memory, of how I have also sought counseling, along with my spouse, to learn how to handle the anxiety and unknown that chronic AI disease brings. 

It began in my early 20s, with symptoms of Crohns, and then endometrosis, with the party of RA and Sjogrens gradually being added in. And one activity that really helped, along with the avenues, such as medication and activity as tolerated, was journaling.

This is just meant for you, and there was something so helpful about writing out my feelings, whether despair, frustration, worries, or even prayers to God, it had a helpful effect. I am sure blogging when also come under this type of help, but I just wrote for my own eyes. 

Also, another activity that is helpful, is for me to also write down blessings whether that means that I am thankful I was able to walk to the bathroom alone without a cane, or being thankful for Julia, our stalward Sjoggie leader, there is usually something that can be identified, to write down. 

Of course, some days are just too dark, to write much if anything. Being kind and forgiving to yourself, when these times come around, is the best one can do. 

Also,, try and avoid the guilt game. I don't think you mentioned that, so I am speaking of my own experience, that I have had to come to terms and grieve, for the person I once was, and accept changes, though it is a process. We are grieving our former selves. 

Ok, I have written a whole book, betw my 2 posts, but one thing that I have always wanted, is that in my 25-30 years of having these chronic diseases, is that maybe I can offer a hand up, to a fellow sufferer. 

Also, maybe it would help to join a specific AS online support group if you dont already. I have a Facebook friend with AS, and I am sure she would know of some groups, if you would like me to inquire. 

You are NOT alone and you WILL be able to find a way to cope with the chronic pain.

 ShEiLa said...
My experience with my first Pain Center... Total failure.
But if at first you don't succeed.... Try try again.

I think it is time for me to give it another try.

I feel the sort of desperation that this lady shared... Dealing with chronic pain is discouraging and downright depressing. Hang in there! Good luck!

 Bubble Girl:Navigating the world in a bubble said...
Hi I am 40 and have Sjogrens, fibromyalgia and 15+ life threatening food allergies. Because of this I have suffered anxiety also. I literally have tonlice in the moment. I try not to think too far ahead. Although somedays its tough and I break down. I have husband, kids and a new grandson also! I worry I wont be around but then I have to remember to enjoy now. Then I can look back saying, I enjoyed all I could while I could No regrets.
For the pain, I have never been a person who takes pills willingly. Except my Plaquenil to keep the disease from getting worse and food allergies from getting worse. I do use the medical green every once in a while but not often because I still work. I have never been a "smoker". But I had to get past that to get some pain relief and it does work. Mainly like was said previously, it takes your mind off of it. You can use edibles , I cant because of my food allergies or you could use a vaporizer. I realize this option isnt for everyone. I just had no choice with my allergies it really limits what drugs I can take or if they can be compounded. Which sometimes leaves me with just tylenol to control pain.
I also see a massage therapist who does light touch. That helps relieve any stress I may feel from constant pain and stress of working too... Which causes my pain.... Vicious cycle. 
Also meditation/ prayer has worked for me. I try to do this every night before sleep. 
I am also always reading... A book or something. It really helps me concentrate on something that is if Im not too tired to read.
I am sorry you are in so much pain. I hope you find some relief.

 c little said...
You guys are all so awesome. You just are.

Ohhhh I don't have the pain you deal with on a daily basis, yet. Of course, I have a short memory and it's warm and sunny out, so talk to me again when it starts raining. 

I do understand your fear of the future, and agree wholeheartedly with the one-day-at-a-time approach as well as prayer. I find I am helped a great deal in my own journey when I reach out to help others as best as I can, even it's just by calling with some encouragement. Pain and depression are so consuming that it is easy to become self-centered and hard, which becomes it's own loathsome cycle.

Brain fog is one of the things I find most shattering. I try very hard to keep my brain active, even though I don't always remember all of it. I write more notes. A lot more notes. Sometimes I lose them, sometimes not, but basically I'm the sticky note queen

I also try to watch uplifting things. Happy endings. Comedies. I don't hide from bad news, and I do love my cop shows, but I won't engage in endless tragedy, like lifetime channel. Your body can't differentiate what is really happening with what your mind is processing, and negativity adds up.

And as everyone else said, you're not alone.

Claire said....
She mentions morphine but does not mention antiinflammatory meds she is taking.  I am wondering if she is taking indocin, the first drug of choice for AS.  Prednisone?  Methotrexate?  Plaquenil? Other NSAIDs?  I take 5 mg of extended release morhpine (Opana ER) every 12 hours and have been on the same dose for about 6 years.  I also take short acting pain meds, but I cannot increase my dose because I have adrenal insufficiency and cannot tolerate higher doses - i.e., they overwhelm me and make me sleepy.  I too would be worried about maxing out on morphine, and the possibility of it making me unable to function.  There are lots of NSAIDs, and I know they can be very hard to take.  For example, FLECTOR patches (diclofenac).  This same drug comes in a gel (voltaren gel).  I can use these sparingly and they work incredibly well. Indocin works for many people with AS but of course once it gets to your stomach, that's the end, you cannot take it anymore.  I wonder she did not mention any other meds she is taking which could make her need for morphine less.  For those of us with similar pain issues caused by inflammatory diseases, opiates are actually LESS effective than NSAIDs can be, if they are strong enough and don't kill your stomach or have other undesirable interactions with your other meds. Controlling the inflammation is ultimately much more helpful than trying to control the pain, in my experience.

Anonymous said...
Just wanted to echo what some of the others have said about trying some different approaches. I'm not sure what all you have tried, but I have a friend with this and her Rheumy started her on an injectable form of Simponi. So far, she is having great results with her pain levels. Please, keep asking, keep searching and keep trying. We are not defined by our diseases. Big hugs to you.

Jan said...

You guys rock! Always with so much help, info, and compassion!

I too have chronic pain from neck injuries, disc degeneration, bone spurs on the spine, Sjogren's, Fibromyalgia, and too much more to mention. I have used prescription Lidoderm patches, which help quite a bit. I've also used several pain meds (along with all the Sjogren's meds, etc), had physical therapy, etc, etc. 

One of my docs decided to try me on Cymbalta, for both depression, and pain. He's concerned too, as it affects the liver, and I already have liver disease, but we're trying it.

I have to say, I haven't noticed anything as far as the 'happy pill', but I have noticed that the pain in my neck, shoulders, and back seems much improved! I have to assume it's the Cymbalta, since that's the only thing different in the last 2 months.

That may not be the answer for you, but as others have said, just keep trying. There will be something, some combination, out there that will help. I understand, I've become so frustrated sometimes, I just wanted to give up.

I am 61, and have also decided that who knows what lies ahead? My diseases are slowly progressing, attacking different organs. But while I still can, I'm having fun! I bought a used kayak (I live in Florida), and enjoy paddling around (for a short while) when I feel up to it. I also bought a used 97 motorcycle, with a sidecar! I am having a blast!! I'm on SSD, so have to save for goals, and be careful financially, but decided this is MY TIME! 

I have to pace myself (still have a hard time doing that), and I find I need naps more often, but what the heck. 

Try to stay in the present, keep finding different things to try, and live life as fully as you can! Believe me, I know how hard it is sometimes, but doing positive and fun things really does help!

Best of luck to you!

Anonymous said...

Thank you all... this is me, the one with the question. All of this is very helpful. Actually just knowing that there are people out there who understand is very helpful.

I'm learning, and one of the things I'm learning about is the grieving process. I had a happy joyful body and now it barely moves. I am sad about that. Angry too.

I'm on Lamictal to help with the pain, and Cymbalta to help with my state of mind. I can't take any form of nsaid's as my stomach decided long ago that they would tear it apart. I do have a pain specialist, but he's impossible to see. I'm just jumping through any and every hoop I can to get any improvement. (Aren't we all?) I've had infusions and Enbrel and now I'm on Humira. It's not helping, but never say die, right? I have nasty side effects from prednisone so I only take it during a bad flare.

Warm baths are amazing... I don't have the attention span to journal anymore. I used to. I also used to be a 3-5 book a week person, but now I'm happy with a quarter of a book. Finishing one gives me a great feeling of accomplishment now.

You said a lot about taking things one day or even one minute at a time. That's it. I am working very very hard to make that a part of myself all of the time. Gratitude for what I CAN do. Today my friend whom I ran into told me to "take it one day at a time." OK. I can do this.

I also made the decision today that instead of keeping it "under wraps" that I would come out of the closet so to speak. Today was a good day so I went out to our local gathering hole and started talking about it. This was AFTER peoples exclamations of surprise that I was out! "Where have you been for like the last year?" I told a few, and it being a small town it will get around. It felt very awkward but it was a small step to my new normal.

I have to accept my new normal and realize that every day will be a new normal.

I say that very easily, but it's not that easy, is it?

Yeah I'm sad.

Thank you all! I needed the advice and encouragement. Me.



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