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Introduction and Relief Vent

Aug 22, 2016 4:49 PM

Hello, everyone. Apologies in advance for a decidedly long post. First, a very brief introduction. I'm thirty-two years old, live in Rhode Island with my wife, no kids, no pets. I installed CatchMyPain around two weeks ago as a means to finally start actively monitoring my various issues. I've since been perusing the community, deciding whether or not I myself would post. I've never liked sharing my grievances or burdens with people, because I feel that when you do, you share your weight with them, which only serves to add to the load they themselves already carry. But today, I reached the point where I need to share.

My wife and I were married in July of 2005, and we were as happy as newlyweds can be. In November of the same year, I fell ill and things went downhill fast. Dozens of appointments with primary care, rheumatologists, gastroenterologists, neurologists, the whole bloody collection. They poked, prodded, did a whole checklist of blood panels and other tests, and came to the conclusion that I was developing an auto-immune disorder and "something else". Initially, my wife was very concerned and wanted updates after every appointment, but I quickly became bitter and cynical with each new visit, tiring of the "let's try this and see what happens", and "eh, that wasn't it; let's see what this does" discussions. As a result, she felt I was simply being overly negative and withdrew from the matter. It was some months later when they finally decided to diagnose Myasthenia Gravis, Fibromyalgia, calcium oxalate kidney stones, on top of the ocular migraines I've dealt with since childhood. Since she has such a kind heart and a sensitive soul, I chose to shield my wife from the whole of the truth, to spare her from having to worry. Some foolish white knight mentality, I suppose, mixed with the aforementioned not wanting to share my burdens.

The problem is that with the dismissive nature of the diagnoses (except the kidney stones, that one was pretty definitive), along with the timing of us moving back to Rhode Island from Hawai`i, no action plan was formulated. I resolved to just deal with each day as it came. Unfortunately, this turned out to be a damned fool thing to do. Instead of explaining to my wife how I was feeling or what was wrong, I started to withdraw and just be miserable. She would want to go out with friends, and instead of saying "I'd like to, but [...]", I started saying no to everything. Most of the worst symptoms entered a remissive state, leaving just the perpetual headaches and migraines, inflammation in the hands, and leg pain to deal with. My family has an interesting tolerance to medicine, with characteristics that include either something working great the first time then never again, functionality steadily decreasing per dose, or no effect at all. I was able to maintain a functional state for some time, helping myself to an as-needed buffet of naproxen and acetaminophen. Everything flared back up in 2009, again in 2011, and now in 2016. Episodically speaking, this has been by far the worst; instead of being plagued for a few weeks per bout, it's been the last five months straight.

My marriage hangs on the precipice because of how miserable I've been and how detached my wife has become. Another effect of my health overall is that my wife and I haven't had children yet, though we both want to. Expending all my energy trying to wear the "everything's fine" mask, I've lacked the wherewithal to want to spend a night rolling in the hay. After a period of each becoming increasingly distant, we had a sit-down at the table and bared our souls. I told her all of the problems I've been dealing with and hiding from her, and while she was incredibly pissed (can you blame her?), she wanted to help and support me. Finally shedding some of that burden gave me the strength to crawl out of my spiral of pain and misery, and try to be more active in trying to fix some of these issues. I had been letting my health control me and us so much, even I didn't realize how far it had gone until this point. Cue CatchMyPain. Between trying to keep track of pain and symptomatic behaviours, marking pain/symptom/fatigue levels on the calendar, and compiling my medical history on handy spreadsheets for quick distribution to doctors, I've finally been pushed in the right direction. Here's where the story falls apart.

Today, I saw my primary care about all this. Third one I've had since being back in Rhode Island, as the first one insisted, despite the inability of my left leg to support my weight, that nothing was wrong, and the second would leave me voice-mails in a tone of voice indicating I had hours to live, just to tell me "oh, there was one blood-work result two points outside the normal range". I brought my iPad to show the charts from CatchMyPain, printed out my symptom and history spreadsheets, and was determined to finally make some headway. That lasted all of two minutes. The neurologist had ordered a blood panel a few weeks ago, and my B12 level was slightly south of good. This resulted in both neurology and primary care leaving me voice-mails about getting B12 injections, because the world could end otherwise! So, that's where the doc started in today. "Balancing your B12 should resolve most of the symptoms you're complaining of". This despite my repeated attempts to state that these problems have plagued me for ten years now (happy anniversary to me?), and one vitamin being low in a single snapshot of time doesn't mean a damned thing to the overall picture. She also spouted, fumed, and fussed about the fact that I take 6-40 220mg naproxen a day, even though I'd told her that in previous appointments, insisting I stop taking it immediately "or risk severe damage", but refused to provide an alternative. To her, everything was hinging on this bloody B12 injection. She also stopped reading the rest of my spreadsheets at that point and went on a tirade about anti-inflammatories having a plateau of usefulness. Again, no useful alternative. I didn't even bother with the pain charts by this point, as I realized she was bound and determined that her word was final and I must not know my own issues.

So, I left feeling rather cross, with that old familiar "this is why I don't go to the doctors and try to ignore my problems" venom in my heart. I truly want to get on the path to managing all this properly for the sake of my wife's happiness, but I'll be damned if examples like today are a good start. It's that feeling of getting to the last rung on a ladder just to be kicked in the face. I'm refraining from picking up a bottle of gin, which is incredibly tempting right now, and have settled on writing this verbose first entry. I'll be honest; I don't know what to expect from sharing all this. Maybe just the relief of finally venting some of my frustrations, maybe not. Who knows? If you've managed to read this far, I appreciate your taking the time. I reckon this has been enough of a rant, and will close this session here. Thank you for reading, and if I haven't withdrawn back into my shell, I'll try to be more conversational and hopefully more pleasant.

Aug 22, 2016 7:41 PM

Since I suppose I didn't ramble on enough, here are a few more tidbits. All through my life, people have come to see me as the one to lean on, the one who will always be there for support or advice during any situation. I think that has greatly helped shape my habit of hiding all of my problems, out of some obscure thought that perhaps if they see the stone tower start to crack, it would wreak all sorts of havoc. Overall, that's probably taken just as much as, if not more of, a toll on me than the actual health problems.

When all the pain, fatigue, and weakness fully ramp up, my give-a-damn has gotten up and gone, so none of the things that need doing around the house get done. The lawn gets mowed when I can push enough to get the task finished, then it leaves me out of order for the rest of the day, and there are numerous started-but-not-quite-done projects because I can't summon up enough gumption to get them done. As you can imagine, that's added some resentment and hostility to the marriage. I'm a mechanical person, and have always worked with my hands in various trades, so it's quite infuriating to quash a solid work ethic because you need to take a break from using tools. When it comes to being on the clock, I used to be able to always force my way through the day without letting anything on, but by the time I get home, it's all I can do to take the boots off and eat dinner. The last few weeks have been substantially worse, and one fellow I work with has been let in on some of the issues only because I was incapable of performing a task on a job site while he was with me...I've told the company owner I need to sit down and talk to him, hopefully pre-empting any concerns about my job performance he may be forming.

To top everything else off, my friend and neighbor had a debilitating stroke some time back and has been relegated to a care facility, which has caused his wife to lean on me for fixing things around their house in addition to everything else I deal with. Fix this, mend that, replace this, re-build that, so on and so forth. They have two sons, one of whom lives far outside useful range, and the other who pulls the "I'm busy" card whenever she wants help. This weighs on my wife, who doesn't approve of the situation, but there's that white knight armour again...I can't turn away someone in need. The wife says I'm like a big, dumb dog. Loyal to the point of my own detriment; this also causes problems, as she feels I'm more willing to help another person's situation before mine/hers/ours. I know there's supposed to be a balance to everything in life, but I figure it's all a farce. Damned if you do, damned if you don't. Be nice, be mean, be caring, be cruel, be generous, be stingy, what's it matter in the end?

Aug 23, 2016 4:41 PM

Welcome to our community family IntuitiveTinker! Wow!! You've been carrying quite a heavy burden on your own for way too long. I'm glad you finally opened up to your wife. It's not easy on our spouses to watch us go downhill in health or socially withdraw.

I'm into my 35th year of marriage, and much like you, my health has created a constant bumpy road for us. I stayed home and raised our children the first 15 years, which balanced out the cost of childcare versus healthcare costs. The next 5 years were spent in PT work & college, which created little time for us as a couple; after I spent 8 the working full time at good pay, and our relationship as empty nesters grew closer. I had health issues through many of those years, with more surgeries than anyone should. And there were times we nearly got so fed up with our relationship, or lack of, was were both unsure if we'd make it. My last year of working, 2010, is when my health really took a nosedive, having 5 in 1 surgeries and needing a year off to recuperate. Fire to fibromyalgia, sjogrens, hypothyroidism, dementia/memory loss, and other issues I can no longer work. Again my hubby and I were at odds about financial struggles and my health. He was not understanding and supportive until he went to my rheumatology appt and started, "I'll just be glad when she gets back to normal and goes back to work." The doc went off on him about not understanding what i was going through, then she spent time educating going on autoimmune issues, mine specifically. He's now my biggest advocate to everyone. What really kept us together was our love for each other & God, and our commitment in our wedding vows. My hubby is a true blessing. He now researches things himself, and goes out of his way to pamper me.

I was always the one my family came to, I volunteered first to help. Over the last 6 years I've learned to take care of myself first, and to ask others to pitch in our volunteer. Changing the way I think and act was very hard, because I'm a caretaker, a problem solver at heart. Learning to say NO was like learning a foreign language to me; extremely hard (and I still don't know any foreign language! Lol). I realized if I didn't open up and let others know I was hurting and in pain, barely able to get through a day, they (1) wouldn't know about it, they aren't mind reader's & (2) they would constantly sit back and wait for me to do everything. As my health worsened they were able to see it and i don't have to verbalize my pain; they see it. I had to take care of me because no one else would. And if I couldn't care for myself if be of no use to anyone else. Due to all the many complications, where one thing affects another which affects another, like dominoes, I have a specialist in every organ system besides my PCP; rheumatologist, orthopedist, allergist, opthalmologist, pain specialist, neurologist, endocrinologist, psychiatrist, cardiologist, audiologist, psychologist, & pulmonologist. And this is just in the last 4 years! It's teaching & warning on the nerves, energy & wallet. But I have a wonderfully supportive hubby. It took me realizing I was at times being angry at him for my health, when I opened up to him. Breaking the egg shell to allow him in was very important. It was an admission on my own part that I'm not supper-wife or super-mom or super-daughter, not could I ever be. Being a type A personality and perfectionist, expecting it from myself and others, was another noose on myself that I had to loosen up.

Finding this community was when I first started opening up to anyone about my pain. That helped me in more ways than I can explain; knowing others understood. In telling you my story, I hope it shows that you are not alone in these struggles. We are all here for each other. We rant, cry, pray, and laugh together, send each other hugs & positive energy. And we don't judge each other because we all face enough judgement already. Without this community I would not have made it through. I thank God that I happened upon it trying to find a way to chart my fibromyalgia.

I'm not sure if you have tried setting a pain specialist or not. Many of us here are under them. Many here try alternative treatments, or natural methods. I've changed my diet to reduce starches, sugar, and I've found I'm dairy intolerant (lactose). I also take supplements like magnesium, D3, iron, B12 & folate (B 9). I hope as you read others posts you can find something helpful. And I hope something I've said might be helpful too. Just know you don't have to feel alone anymore. Hugs love and prayers that you find new ways to better cope and get much better doctors & care! πŸ™‚πŸ’•πŸ™πŸŒΈ

Aug 24, 2016 3:22 AM

Hello Tinker ⚘
Nice to meet u Sir πŸ€—
So glad you found us! There are lots of good people here... πŸͺthat understand and often have experienced ur situation first hand 🐫
Come rain β˜” or shine β˜‰ someone is always here to lend an ear... or a shoulder...πŸ‘’ or just a big boot to ur ass (if needed)... or share a giggle with u πŸ˜‰...
So welcome to the community, i hope we can offer a little support to u too! πŸ€—

Mar 26, 2017 9:18 AM

FlappysLady, thank you for the greeting and sharing your background. It's fantastic that your relationship has held throughout thick and thin. While unfortunate that so many have to go through life dealing with spectacularly challenging health issues, reading the stories and conversations here makes it feel a bit less like someone's sitting at a master console just saying "Hey, let's see how we can pick on this guy today! I got nothin' better to do". Knowing these autoimmune, central nervous system, and other disorders are there is one thing, but having found this community adds the human element that helps ground ones own situation.

Lulabel, thank you for the greeting; it's nice to meet you as well. I'm definitely one for shaking my head and delivering a swift boot to the ass where needed, usually prefaced with a wiseacre comment. I've seen the care that everyone has for each other in the community, and I've wanted to be more active, but life has been life. Now that things are more...well..stable isn't the word, but it'll do, I aim to be more present. My advice isn't always heeded, and I've been told my shoulders are too bony, but hey. It's the thought that counts.

Mar 26, 2017 9:35 AM

I don't know why I am just now seeing this. :( Am.so.hoping you have found a good doctor by now. I know on one of the fibro.sites they have a list of good and bad doctors in US. If interested I can get the link for you.

Mar 26, 2017 9:37 AM

Sitting in ER with dad but will.add more once I am home. ((( gentle hugs )))

Mar 27, 2017 7:12 AM

Hello, Mimikay. Hopefully everything's turned out alright at the ER. I'm always interested in extra information to squirrel away, and would appreciate the link.

The situation has changed a bit on the doctor front. The wife drove me to a primary appointment shortly after my original post, and her voice added a fresh viewpoint to the situation and finally broke the wall of stubbornness the doctor and I had. She put me on Cymbalta, and I agreed to stop pounding down 40 Aleve a day as a peace treaty. Ultimately, the Cymbalta failed horribly, as the side effects were so cognitively crippling it was hard to say if it was actually effective. Worth a shot. She cancelled that and didn't try anything else because at the same time, the neurologist sent me to a specialist for the Myasthenia who started an aggressive and varying med plan to reverse the degeneration from it, and that became the primary concern; primary didn't want to cause too much chaos in my system until the Mysthenia was regulated (spoiler alert: it still isn't).

Since then, I've been on increasing levels of meds for Myasthenia, and others to counteract the eventual osteoporosis from those. The first neurologist found out I wasn't taking anything for pain at all and put me on Gabapentin, which helps the nerves and the old leg issue a fair bit, but everything else still screams along. I had a respiratory/tachycardic crisis in mid-February, had some tests, and was informed of an aortic aneurysm, which further complicates things, and have appointments slated with the cardiologist and pulmonologist. Going through recently acquired copies of my old records, I found my former primary failed to disclose spinal osteoarthritis that was noted by an X-ray technician (who was was actually looking for kidney stones), so there's an appointment with a rheumatologist, and primary's worried about bilirubin having been as high as 4.6, so there's the gastroenterologist appointment, and with a history of kidney stones, I made a preemptive appointment with the urologist to discuss the medications I'm on. He was...not happy. If I recall, his exact words were "Who the hell prescribed all these without telling me!? ...you have stones again. If you don't think you do, you do. If you don't, it's a miracle. If you don't, you will."

So overall, things are still in a state of decline, primary's taken the "you're way over my head, here's a bunch of specialists" stance, and as if 2016 hadn't been enough of a struggle physically and financially, I was served with divorce papers a few days before Christmas, and have been trying to work through the logistics of that. My sense of willpower (read: thick-headed Polack stubbornness) has always been enough to get me through the maelstrom that is my life, but that on top of everything else was my breaking point. I went out and found myself a psychologist, because I didn't have enough -ists in my phones contacts list. My logic was to find someone completely detached from my life that I could sit down and air my grievances to. What I didn't expect was to make her cry in the first twenty minutes just by recapping the overview of current affairs. It's been a different experience for me, I'll say.

Work quality was already declining, but now is a severe issue. Due to the increased weakness in my dominant side, the rate at which it burns out, the loss of dexterity in the hand, and now the respiratory system being afflicted, it's a struggle to do half of what I did. I've already burned all my sick and vacation time for the year on appointments and trying to get extra money into the house, spent the asinine amount that is my medical deductible, and March isn't even over.

I was hoping to end this on a more positive note, but I just looked at the clock and need to race out the door for work. I have some nicer things to say; I'll try to tack them in at lunch or in the evening.

Mar 27, 2017 9:24 AM

I am so sorry. Your plate is definitely full. When I lived in Minnesota all my doctors stayed connected with each other.. That made it easy to build a team. I haven't found that anywhere else - sure miss it as it improved the quality of care ten fold. Let me go look up that info. Will be right back.

Mar 27, 2017 9:30 AM

Here is one resource...

http://fmscommunity.org/betsy.htm

Mar 27, 2017 10:08 AM

You remind me a lot of my dad. He is 81 now. He is also retired military. Often I just refer to him as The Major. Lol. He is always trying to help others. Up until a few years ago he would be out mowing others lawns or doing other such things. When asked he would say that those people he helped were elderly and needed someone to help. Most of them were younger than dad. He is an elder in the church and is someone most people will come to when they need a friend to talk to. So - he feels he has to put on a face of strength in order to not cause anyone to worry. That's backfiring on him now. He can barely walk due to back, hip and rib pain. So has taken to using mom's old came. Trying to get him to understand that he can't keep the pace he used to is like pulling teeth. Finding a way to show him He can still be productive without it causing this pain increase - well that's a work in progress. :)

With Fibromyalgia at least you will find many who have low B12 levels and are doing the shots and supplements. Its not an answer for everything but it could help. Vitamin D is also.something many of us are low on.. I take 3000mg of it a day to.keep my levels in normal range... And try to get as much sunshine as I can.

For nerve pain many use Alpha Lopiac Acid. I just started taking mine almost 2 months ago and am noticing I don't get as much of the numbness and tingling as I used to.

Turmeric is something many take to help with pain. I have just started it so can't tell you if it works for me. Many here can share their stories about taking it though. I did learn you need to make sure - if buying it in capsule form - that it also includes black pepper.

Like you - I also have migraines. There's a migraine tracker app. I use called My Migraine Buddy. Its great for tracking migraines and figuring out triggers etc.

I haven't had much luck in controlling them but my pain doctor has done some occipital nerve blocks when the migraine is constant. It helps break the cycle.

Kidney stones is also something I deal with except I have 3 small ones that have been there for at least 3 years. My doctor had me on cranberry tablets and also cherry. Not sure if it helps but the stones haven't grown and no new ones have been added.

Its hard to balance medications to help one issue without flaring another. One reason why it's so important for your medical "team" to keep each other informed. Of they can't then get copies of the notes from each appointment and mail the (or fax or e-mail etc. ) to each of your doctors.

With migraines - often the pain meds we take can cause rebound headaches. Finding that balance is also hard.

Its frustrating but often when you live with chronic conditions its trial and error to find what will or won't work for you. We are all different so.what might help me won't necessarily help you and vice versus.

Ok. It looks like I have written a book so will close now. I hope you had a good day. Am so.sorry to.learn of your divorce. Chronic illness can truly tear families apart..

Mar 30, 2017 12:56 AM

Thanks for the links - I've earmarked a couple of numbers to call from them.

Your father sounds like a great fellow. Definitely dedicated to all others, to say the least. At 81, I'd say he's more than earned the right to slow down a bit, but can appreciate the challenges that presents after being so active for so long.

B12 and Calcium-D are already in the daily list, though those levels haven't been checked in a while to see what numeric difference there's been. I hadn't heard of alpha lipoic acid or considered turmeric, but I've only just started broadening my horizons for options, so who knows? They're certainly worth a look.

Except back in the beginning, we never really invested time trying to figure out the ins and outs of the migraines. It's been so long since then that it's just down to realizing one's coming on and weighing the responses. I had installed Migraine Buddy but hadn't setup an account, then forgot all about it. Thanks for reminding me!

The kidneys, I largely ignore until, like an idiot, I recognize I shouldn't have and there's an issue, then there's an ESWL and a lecture about hydration and toxin displacement every five or six years.

I'd rather hoped this primary care was going to act properly as a central information repository and distribution point for the specialists, but I suppose the old adage "If you want it done right..." comes to mind, particularly with medical cross-referencing.

My co-worker proposed trying spirulina the other day, but admitted that he heard of it as an option from a friend of a friend and offered no guarantees; haven't looked into that yet either.

I set the bar low for what a good day means - if I can't remember anything worse than an "Annoying" on the scale, that's decent. Thanks for your thoughts. Hopefully you're faring well. Time to grab a couple hours of sleep and start Groundhog Day all over again.

Mar 30, 2017 10:46 PM

Ground hog day. Lol. Classic way to describe our lives. I am doing ok. Mom and dad have not been well so since I am the caregiver I find myself constantly running. Then when asked how I am.I either say fine or ok. Why do we do that?

So - while I.am not fine... I live with the hope that I will be.

Heading to bed. Its day three for this migraine. Calling my pain clinic tomorrow.

Mar 31, 2017 9:41 AM

Have you asked to see a Rheumatologist and or a Nephrologist and a neurologist? Sounds like lupus nephritis. If this is affecting your kidneys Naproxen and antiinflammatoies of any kind are dangerous for you.
Please don't give up looking for answers this is a very common issue for the majority of us with autoimmune disease.
Document everything. Take pictures of things that can be seen.
Do you have dry mouth/ eyes/nose?
I wish you all the best and glad you found the courage to open up about it with your and here.

Mar 31, 2017 9:51 AM

Sorry I just reread and saw that you've been to a couple of the specialists that I mentioned.

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