Still Chasing the Cure…

Still Chasing the Cure…

by Liza Zoellick.

In June, I wrote a piece called “Chasing the Cure.” Well, it’s October, boys and girls and guess what? Still chasing it. A little preamble, I was having some shoulder pain in both shoulders, the right particularly bad and while I figured it was Rheumatoid Arthritis related, I thought to be sure I’d  go and get it checked out by an orthopedic who both my husband and 18y.o. see. He treats shoulders and knees and I liked him because he gives all non-invasive procedures a chance before contemplating surgery. I loathe the idea of any surgery so it seemed like a good route to take. After all was said and done, he advised, physical therapy and injections and to try to make this work, because the reality is, there are no good options after this and shoulder surgery is brutal. His words. I got the injections and it hurt like hell. The ones on the right side much more than the left and driving home was near impossible, but I made it. I packed myself in ice but that did not ward off the migraine I got on top of everything. In fact, I was in so much pain and so worried, I did one of the things I tell everyone not to do and I start Googling adverse side effects from cortisone injections. There really are no adverse reactions, but they make inflammation flare for 24-48 hours after injection. No one thought to warn me at the doctors. This is something that they give so often as part of a non-invasive for of treatment that they didn’t think to warn someone who suffers from chronic inflammation that maybe- she might flare! I was angry as hell and as I lay in bed half shivering from ice with a brutal migraine I wondered to myself how much is too much, and when is enough, enough?

Liza Zoellick

Today, I am much better. Still far sorer than I care to be, given my pain level is already high, but it’s doable and likely to feel even better tomorrow. However, I cannot help that nagging little thought in the back of my head that keeps saying, “When is it enough?” I can’t argue with it either, because I spent most of the night in a fitful sleep and getting out of bed to change ice packs. I’m flaring pretty badly today, though better than yesterday at the onset of the injection, but how much do we allow our bodies to endure in the name of a “temporary cure?” Because the reality is, that I can do the physical therapy and if it helps (which he really hopes it will) I could continue it at home to “manage” the symptoms. The key word there is “manage.” The injection is ultimately temporary relief so I can get physical therapy and then after, maintain exercises at home, but the pain could return and then the bigger question is “What then?” Do I endure surgery and the 100% likelihood of a flare, and monstrous pain, or do I simply tack on another chronic issue and more pain and try to manage symptoms at home? Though I integrate holistic remedies with whatever treatment/medicine my doctors have me on, I wonder about utilizing Eastern Medicine as well. The one problem with that is it is not covered on my health insurance and with me not working, trying to get on disability, I cannot afford it. But where this is a will, there is a way, right? I’ve learned enough on my own, taught myself enough that if I can find good sources of material I could teach myself some thing that might help. But it is exhausting work.

Here’s a little glimpse into my mind, so maybe you can understand why I am fretting over this. Right now, I am 44yrs old. I’ve had health issues almost my entire life with the last 5yrs or so being the culminating point of many health issues. I’m not getting any younger and while “normal” or “healthy” people are just experiencing some little hiccups in their health, I’m already in a full-blown, health crisis. To put it mildly, the forecast isn’t looking especially rosy. Do I want to be looking at a gallon size bag of medication like my grandparents had when I was a child? Is there any way to thwart the very real possibility I may be in a wheel chair? Do I actively continue to consult Western doctors and medicine to “manage” my pain and health, or do I branch out into the unknown of Functional Medicine and Eastern Medicine to perhaps, think outside the box enough that I might be able to live happier and, in less pain, when I’m older? These aren’t easy questions, but I bet they are questions we’ve all had. These aren’t questions that anyone can answer for us either. They’re personal and have to be answered from a place that looks at all our dreams and hopes for the future and what we can be happy with. What we can live with.

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Authored by: Liza Zoellick

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Cheryl

Just to give the author some encouragement…I had pain in my left shoulder that started as a little twinge. Over the next few months the little twinge was a full blown pain that nothing could get rid of, Injections, ice,heat, therapy, meds, a splint. You name it, I tried it. Finally enough is enough. The pain was now in my neck and upper back for favoring the problem.

Just so happened I was a CMA at a teaching university. A doctor there on a fellowship noticed my constant wincing and holding my arm. He asked to look at it. Suggested I visit his office. I did and received an injection. No good I told him, it did nothing. He performed surgery the next week. Lots of physical therapy and the usual follow up treatments.

I was very aggressive with PT. at home. Within 2 months my shoulder healed beautifully with no pain.! The doctor did you no favor by making surgery sound horrible. Does it always work, no. Do you still have pain, sometimes. But research surgeons before making a final decision on the process. My case is not everyone’s outcome. But I can tell you, I have had 9 surgeries and all were very successful but one. My knee is still a mess. I had a few,good years after each one so I am thankful it prolonged my quality of life. It may not be the best for you, but I was glad I did it.

Fast forward many years. I am in PM for 28 years. Like many on here, there is little hope of things changing. You are a fairly young woman yet. You have a lot of life ahead of you. Don’t discount surgery just yet. Praying doe you and all sufferers of chronic pain.

Lindajean Dorris

I am at the point of enough is enough. I have Scleroderma /Systemic Sclerosis with D.D.D. with Spondylosis, Connective tissue , muscle, and nerve issues. Here is what I am getting from my Doctor’s, you have an incurable desease. Oh I forgot full fledged Raynaud’s. Then they say we have nothing we can do for you. You are no longer a surgical candidate, due to having too much colligen causing scar tissue to undo anything tried. I have stenosis in neck and lower back spinal bifida on my lowest vertabra. I suppose I could go on listing everything, but my point is, no Doctors will help to try to get any problem perminatley taken care of. I struggle and fight to get to their office for appointments, no shower for weeks, pale, sick in pain, weak and they say ” you look really good”. That statement blows me away because I have crawled back up my back yard on my hands and knees because I can’t get up. I wet and mess my pads so badly it goes down my legs all over clothing and floor. I struggle to get my muscles to get my lungs to draw in oxygen. It is as if they feel if I would learn to relax and meditate all would dissapear. Yet their words, your problems are not cureable eventually sooner or later I will die from them. I live by myself my family ( siblings don’t live close) so it is up to me to clean, wash, get things I need run errands pay bills, everyday things. I honestly feel that I have just been designated someone on Medicare advantage, where the Doctors get paid pennies, no equipment nor devices are paid for and they are not up on my desease so I am allowed to suffer worse than any animal would be allowed. I don’t want to loose my freedom plus I could never pay the price for care. I choose to stick it out and fight like Hades to do what I can for myself with a medical system that is totally broken in the state of Idaho. I have tried to move closer to my family but that requires energy and money. Each day goes by with me afraid I will die alone.
Lindajean Dorris

Heather

I started having chronic pain in my 20’s and am 39 now. Worrying about the future takes energy, which is limited. I have limited control over the future and only have power in the NOW (to manage symptoms, to be deliberate in how I think and emotionally process things, and to try to enjoy my life within the reality of my health challenges).

I do not search for cures. I am interested in remedies that chip away at my symptoms because every little bit helps. I also want to try to be active, as I can. My life has changed because of my health. That statement sounds simple but it isn’t. It is a reminder, an acknowledgment that allows me to maintain my perspective, but it isn’t a statement of surrender.

I am interested and curious about research but having chased answers for years, and having thought that new findings would be “The Answer,” and then never hearing about them again… I now am grateful for my heating pad, stretching, my meds that do reduce symptoms of even other chronic conditions, Epsom salt soaks, topical treatments and now, meditation. Whatever chips away at the granite of my health issues. It all does add up.

I have asthma, anaphylactic food allergies, sleep apnea with excessive daytime fatigue (to be evaluated for narcolepsy), widespread osteoarthritis, fibromyalgia, cervical spondylosis, degenerative disc disease, acid reflux, high cholesterol, high blood pressure, migraines, a Pituitary gland cyst that returned post-op, and other more intermittent health issues. If I had time and energy to wrap that all into a nice, neat package and deal with it, I would. Instead, I find it best to live in the moment, care for myself as best as I can.

If health issues have taught me anything, it is that my best laid plans and the future are things I have limited control over and limited energy to spend on. Meditation has been a blessing in that sense and it has reduced some of my symptoms and helped me keep things in perspective.

Denise Bault

Yes, when is enough really enough? That changes daily for me. I just got 15 trigger point injections, so right now I’m feeling great….knowing that at any time I can over do it and have the pain cycle ramp right back up again. It took me three years to finally get disability, which WASN’T where I saw my life going! During that time, I spent a fortune trying something, anything for relief. Western, Eastern, homeopathic, holistic…you name it, if someone said, “This might work!” I tried it. Most helped for a short while. Some not at all. It’s really a daily choice, isn’t it? How much pain do you have to be in to try the next great thing? I used to joke with a friend of mine about our pain. We said, “If someone would tell us to hop around on one foot, cluck like a chicken while eating dog poo -in order to get rid of the pain- we’d gladly ask for a spoon!” I hope and pray your pain doesn’t consume you. Easier said than done, eh?

Dear Liza, always enjoy reading your articles they get to the heart of every issue that chronic pain patients face. I myself have been in chronic pain for 27 years. It started with chronic migraines and I wore my body out by doing a lot of hard physical labor by the age 38 .I was already showing signs of joint damage. Now I have osteoarthritis in all my joints. My pain medications were taken away in 2016 pain clinic closed. And then I found another pain clinic and he just padded the medical records. And when I talk to him about the typo, I ended up getting the letter being kicked out. now I have been blacklisted because of what this doctor wrote. Which total lies. I’ve tried all kinds of medications, Chiropractic, acupuncture treatments. I suffer with chronic migraines I get them three to four times a week .there has not been a medication that prevents them that works or the medication to take for migraine it just lessens the headache that doesn’t get rid of it. One thing doctors will not tell you is all the details and side effects even if you asked it seems that they leave out the most dangerous ones of all. I hate to be frank about this but I think we all need to protect each other. I have had steroid injections from the top of my head to the bottom of my feet and everywhere in between. No doctor has ever told me that this would damage my eyes nerves that to the point of a of a 80 year old. I am only 52. Even though I told my opthamologist that I was on steroids at no point in time did he ever give me medication to counter react the fluctuation of eye pressure caused from steroid use. It took a new eye doctor to give me the news of the damage of my eyes and she said it was Direct use of steroids is the only thing that causes it. Steroids, aspirin,nsaids cause gastritis, diverticulosis. Do not use if your stomach is inflamed. You can cause stomach bleeding. Do not use aimovig if u have high Blood pressure cause stroke. Good luck .

Sally

Liza, I can relate to this so well. I agree with your orthopedist, if he was referring to shoulder replacement surgery as being brutal. I had my right shoulder replaced in May and compared to when I had both knees replaced at the same time (and both hips done separately), I didn’t think the shoulder arthroplasty would be that big of a deal. In fact, pre-surgery, I was even going to attempt having my left one replaced this year, too. Afterwards, I vowed never to have surgery again, no matter what, because the recovery was so rough mainly because of swelling and uncontrolled pain. In addition, I developed golfer’s elbow, tennis elbow and bicep tendinitis in the same arm. I’m still trying to regain function, can’t seem to get rid of the tendinitis and can’t lie for more than an hour on that side.

So the point is no one can tell us and even with our best educated guess, we can’t know if a procedure or therapy will or won’t be doable or even leave us better off. Acupuncture and eastern modalities work for some people, unfortunately, you can’t know if they work for you unless you try. I spent several thousand dollars at UCLA’s East/West Medicine clinic with Chinese trained doctors to no avail.

I am sorry you are facing these issues.

David W Cole

Liza, I have a bone-on-bone arthritis shoulder with two tears in the tendon, I also have peripheral neuropathy, with some other elements as well however the point I’m getting two is I have now decided to try DMSO, I remember my dad telling me about it over 50 years ago. I just went out on the porch and got my first shipment. I’ll have to wait a couple days to try it because I’ve been putting other kinds of creams on my arm and I don’t want to get into my bloodstream. DMSO gets into your bloodstream within seconds you will taste it in your mouth. I believe it’s made out of tree bark. It can be dangerous if you’re not very clean when applying it. It’s such a good carrier it will carry bad bacteria right into your bloodstream. However I remember my dad putting it all over his arm and I know it wasn’t pharmaceutical grade back then. Anyway if you think it’s something you might want to try, I got 4-4 ounce jars 50% DMSO/50% aloe vera and 2/8 oz bottles of pure DMSO for about 50 bucks, they have several different kinds of products, it would take too much time to to explain how it works but you can go to the website check it out. I can’t wait to try it, as it said something about helping out with neuropathy pain as well. DMSO has been around for a long time. I’m hoping it will rescue a lot of us pain patients that have been cut back so far on are meds. Anyway I thought I’d share because it’s supposed to work for arthritis. Good luck and God help us all. https://herbalmana.com

Liza Zoellick

Dragonfly, gentle hugs. I’m so sorry you are having to go through this. I truly believe it is a violation of medical Hippocratic oath to leave someone in pain and agony. I really hope that you will find some comfort.

Liza Zoellick

Laurie, this is another thing I am investigating. I have a few friends with it who have also mentioned it to me. It’s finding the right doctor in my area who can correctly diagnose it. Not very many. Thank you!

Liza Zoellick

Dian, thank you and I am so sorry about your granddaughter. I hope that it gets brighter for you and 74 is young!

Liza Zoellick

Kathleen, that is some amazing information. The one thing I have noticed is that when I go on prednisone packs, about once a month, I feel almost normal. Of course there’s the side effects of prednisone but I feel okay. Will definitely look at that.

Liza Zoellick

Tim, thank you and I will look into it!

Liza Zoellick

Thank you Virginia! I wish you all the best and continued brightness in this darkness.

Nancy Neville

I have lived with chronic pain for 24 yrs.from RA,OA,degenerative disk disease and fibromyalgia and have been close to feeling like I would need to move into an assisted living facility.

One modality that has helped me a great deal is Mindfulness.It has taken me over two years and am still learning two big concepts which as a nurse I know are valid,as a patient I know works.

As soon as you start thinking about how you are going to feel,whether it be an hour tomorrow or on down the road YOU have increased your stress level,the brain responds by telling your body to dump cortisol and other related hormones and up goes your pain.

You can learn to stay in the present moment most of the time not thinking about anything else,you can take care of or enjoy whatever is going on then.Even,if at that moment it is something very difficult or unpleasant you need to do.You have not spent time and energy before hand stressing about it when u could have been doing something else you may enjoy like reading a magazine,watching a program you like.

Stress equals pain so the goal is to learn not to think further ahead then the moment you are in. No one in this world can tell you how you will feel even a minute from now but I CAN guarantee that if you are expecting pain that IS exactly what you will get.In addition if you have words in your vocabulary like,pain,suffering,terrible, debilitatings etc. opposed to perceiving pain as varying degrees of discomfort,you have medical issues as opposed to medical problems your brain can learn a different response to discomfort,whether your discomfort is at a one or a ten.

How we perceive anything is learned.That means it can be relearned differently.

Yes,I still have pain and always will but it feels more manageable most of the time since learning a new perception of it.Changing my perception just gave me another tool to use, not a cure all by any means but I’ll take whatever I can get.

Virginia

I feel you, girl, really. I’ve differing issues, but same questions, and same situation with financial woes. However, I am on disability and let me tell you, there isn’t much help from that quarter. Many things are not covered.Until I was able to collect on my pension, being old enough now, it was very difficult to manage paying for treatments which didn’t work, and that were not covered.
But, thanks be to the Lord, He got me out of bed and helped me help others which did great things for my self worth and took my eyes off myself and the pain, if only for a little while.
Helping others worse off than yourself puts things in a different light altogether. It brightens much of the darkness we chronic pain sufferers can allow ourselves to live in. God bless you, sweety, and thank you for your message.

Tim Lutz

We went functional med. Glad we did they had to use genetics to figure out my wife’s problems. Cutting edge. Much using observable time tested natural medicines. Rather than “modern” concocted chemical illness management. Also check into an ART chiropractor.

Kathleen Kaiser

I’m wondering if you what you have is something called polymyalgia rheumatica. No doctor is going to think that that’s what your problems are because of yout age. PMR typically affects people over the age of 50 but on rare occasions it can affect someone as young as 30s. You being 44 you’re on the cusp. Google the disease to see if your pains are similar. I am only suggesting it because you said that both of your shoulders hurt and I think it would be surprising that both of your shoulders would go out at exactly the same time. Instead I would look at possible diseases that cause joint and muscle pain. PMR always affects bilaterally so that’s what made me think of it in regards to your complaint. There are two easy checks for this. First the doctor should run a sed rate (ESR) and a CRP (C-reactive protein) blood test. If these are elevated then he should put you on a dose of prednisone in the neighborhood of 15 to 20 mg. If this prednisone dosage works to relieve the pain and it will be almost instantaneous with the first dosing in most cases, if it works then it’s an absolutely certain that you have PMR.

Dian

You are strong.

Dian

Understood, have EDS, I’m 74yrs young(in my mind), I’ve been misdiagnosed so many times, have endured many a painful remedy because of such, including miriads of of shots in so many places lost count….which have exacerbated my EDS. I finally took matters in hand, started to research, putting all my odd weird symptoms together, plus all what I thought were the cool things I could do with my body, I’d never heard of this syndrome, took the Beighten test, aced it(being very critical) for someone of a younger age, I mean weird things like, skin tags, tiny tiny blood spots popping up all over, disappearing coming back, list goes on and on, told my pain Dr …well your treatment wouldn’t change, WRONG..so I’m doing what your doing sweetie seaching for my own help..kudos to you for your digging at a much younger age than I did…my precious granddaughter died from vascular EDS, April 3rd of this year, she was 26. Stay strong..many hugs to all out there dealing with various unseen health issues…be safe and blessed.

Laurie Ferendo

Maybe you have Lyme disease with co-infections? Ever been tested? My daughter suffered for 14 YEARS before she was diagnosed with it and Inflammation rate always high…. corticosteroids injections sent her into tail spins for weeks, migraines , chills, sweats, vomiting. ….was told she had arthritis, fibro myalgia, JRA, percarditis, IC, bla bla bla bla bla. … ALL LYME DISEASE WITH CO-INFECTIONS BARTONELLA AND BABESIA , ROCKY MOUNTAIN FEVER, CAT SCRATCH FEVER (COUSIN TO MALARIA )!
NO ONE KNEW WHAT TO DO WITH HER …..BE YOUR OWN ADVOCATE. …. FIGHT FOR ANSWERS.
WE DID ….MY DAUGHTER IS ALIVE !

Dragonfly

I was on pain management for 10 years for ehlers danlos syndrome type 3. Im in pain all the time. My meds were taken june 2017. In oct 2017 my ribs got involved, moving, popping out place, grinding, burning. I have begged my doctor for a year with al no answers. Accupunture, chiropractor, physical therapy……….. im sick bbn of this [edit]. Give back our lives.