Should I care?

[CatherineTheGreat]

I'm mostly only making this post because someone I care about told me I should look for more answers. I've only had fibromyalgia for about 4 years, and the first year or so I could still kind of function but it's slowly become worse and worse. For a long time I tirelessly pursued relief and coping strategies. I've tried every medication typically used for fibro and many that aren't. I've tried cannabis in all its forms. I've tried a dozen varieties of massage. I've tried biofeedback, CBT and DBT therapies. When I got desperate enough I tried a whole bunch of alternative medicine I don't even believe in.

About 6 months ago I just stopped. I stopped going to my therapist, I stopped taking meds for depression. I stopped seeing my GP. I definitely stopped seeing my useless "specialist." I stopped trying new remedies. I've been much happier not having to deal with any of it, especially since I live an hours drive away from anyone competent enough to even attempt deal with my issues. I've actually been relatively content, at least compared to the state of depression I was in when I was burning myself out looking for answers.

The irony I guess is that I do know what will provide relief, even if it's only temporary. It's opiates. I tried a percocet I had laying around from my mom's ankle surgery (she didn't need them anymore) and I felt like I was healthy, if only for a few hours. I was so ecstatic I went for a short run. (I was a fitness fanatic before I got sick.) Needless to say the run was a big mistake, but I digress. I cannot for the life of me find a doctor who will give me opiates. I realize opiates are imperfect, likely temporary, and potentially dangerous, but I'd rather have a temporary fix than no fix.

I also was unable to obtain disability since no one believes a 21 year old has a debilitating invisible illness. This has been tolerable I guess since I have fairly well off parents who can afford to feed and clothe me. Though, I often worry that when they die I'll be resigned to a life of poverty. I'm at a point where I hope I die of poor health before they do because I have no idea how I'd pay for food much less anything else.

To make matters worse I've started to have some serious cognitive decline. I struggle to form sentences. I don't remember what I did yesterday. If I didn't have a calendar on my computer I couldn't tell you what month it was.

I've reached peak caring. I'm all out of f**ks to give I guess you could say. I suppose the point of this rant is looking for an answer to this question: Should I care? If yes, how?

 

[MariaC]

Hi Catherine, you are very young to have been burdened with fibro. I am 55 and I have had it for almost 8 years now. My first reaction was denial and then anger for the longest time. What I couldn't see was that the anger was draining me so much that it made my fibro worse. This past year I decided to take my life back and accepted the fact that it won't go away. The pain is still there but somewhat diminished because I focus on the good things in my life everyday. For me, living in Montreal, the winters are the worst. Fluctuating temperatures make my fibro flare which is usually in February (like now :-/) The only thing I repeat to myself continually is that it's not degenerative. It's only pain and my body is not shutting down with a terminal disease. I know this is not what a 20 yr old should think about, but at my age I've seen family and friends fight cancer only to lose to it. Believe it or not I find it makes me more appreciative of the little things that make me smile. For me, drugs did muddle the pain but also muddling my brain so I got off everything and I prefer to have a couple of good glasses of wine to soothe me instead. My recommendation is you find a doctor who believes you and works with you to find a good balance for you. Good luck and hang in there!

 

[Wineisfine]

Catherine you have value and worth, thats why you should care. Despite fibro, you have gifts and abilities;its a matter of discovering what they are. I know its hell; the pain, the lack of help; those who dont believe you because "you dont look sick".

I guess my advice is too experiment with different hobbies and interests, even fitness. As far as SSDI, dont give up.

 

[Marvis]

Hi Catherine. I'm so sorry you're struggling at such a young age. Yes, it's definitely worth it. There are people out there advocating and searching for ways to treat and cure these invisible illnesses, and with your youth there is so much hope that they'll figure out a better treatment that will give you a beautiful life. I can tell from your writing that you are an intellegent, 'thinking' person. You are very well-written. Try to find a way to use that gift to find some beauty and light outside of the darkness of your disease. There are some really inspirational people out there that might help you. There is Jennifer Brea, who wrote and directed the movie Unrest (recently released at Sundance Festival) from her bed. She suffers from ME (or chronic fatigue) and her story is inpirational. Look her up on TEDtalks. There is also a site called The Mighty and there are some young writers on there in the chronic illness and fibromyalgia sections. It might help you to hear from, and connect with, young people like yourself who are struggling. I completely understand the 'giving up' on finding help. Is there one doctor or counsellor or naturopath that you connected with? For me, it's just my familly doc. She doesn't know much about fibro, but she at least knows me and is willing to be a guide as I try to navigate this disease. Hopefully you can find that one person. I'm sending warm hugs your way.

 

[diamond]

You do write eloquently and from the heart..this illness is so brutal and im so sorry you have it at such a young age. I too am now in my 50s ten years into fibro. If opiates do help maybe spend your time and rope in your parents to find a doctor that might be prepared to prescribe..,,maybe used sparingly they would give you back some quality of life at least enough to give you some of teh pleasures you/we all crave and need to help keep us seeing the point....i soooo wish you luck in your presuit of improvement.

Fibro/CFS/ME they all need more research and proper awareness and the stigma removed that hinders us from the respect we deserve for how strong we are and how well we cope and fact this disease is real and can be crippling.

Big Hugs x

 

[CatherineTheGreat]

Thanks for the replies. I read them and wanted to reply sooner but I was too foggy to think coherently. (I might still be so bear with me.)

Maria:
I never really had a denial stage. Fibromyalgia isn't the first horrible thing to happen to me (nor the second, third, etc.) so I went into it with a mindset of something like, "Okay, another problem, time to solve it." Of course, after doing research I realized this wasn't going to be something I could just "solve" with determination and effort. That made me thoroughly depressed. Even so, I went into treatment with every fiber of my being.

I'd only salvaged my life from an array of other problems just a couple years prior. I was getting straight 4.0s in college. I was working 30 hours a week. I was -and I say this with no exaggeration- at an Olympic level of physical fitness. I ran 50+ miles a week on top of 5-8 hours at the gym. Within a matter of a year I degenerated to a point where I couldn't think, couldn't work, and couldn't run. Even with all that I can't get angry. Sometimes I feel like I'm broken or weak. Not because I'm sick, but because I'm just sort of rolling over and giving in, because I just don't care anymore.

I, too, find some relief from alcohol, though I have to drink a fair amount. Being house-bound whenever I'm not bed-bound, though, I rely on drinking whatever my parents will give me, which is never enough. I guess I understand that they don't want me relying on that all the time.

Wineisfine:
For a while I took up painting miniatures, (little plastic figures) but lately it's been too intensive. I tried fitness but that always sends me into a spiral of pain that takes me days if not weeks to get out of, even when I do very mild exercise. Now I just mostly watch TV, read, and play the occasional video game.

Marvis:
I really loved that TEDtalk. I'll definitely be on the lookout for when that movie comes out. My therapist was great, she helped me through all my depression, PTSD etc. I have a lot of capability to reign in a lot of the mental and emotional challenges related to my fibro, but found nothing from my therapy helpful in actually reducing my pain or fatigue. My main doctor is likewise fantastic, but she doesn't feel like she's at all able to tackle my fibro. I've seen a number of other physicians etc. and only ever got incompetence, condescension, disbelief or some combination thereof. My latest doc was supposed to be the preeminent pain management doctor in my state. When I tried everything he asked and it didn't work he just decided I didn't try it and told me I was wasting his time by lying. That was the point I gave up.

willow:
Unfortunately, my state changed its laws a couple years ago so that if I get addicted and OD, my doctor can potentially be held responsible. So, virtually no one prescribes opiates for chronic pain anymore.

Thanks for the compliments on my writing. That makes me feel good. I used to write so much better, I think.

 

[Marvis]

I wish I could do more to help you than just writing on this screen. It sounds like you're in crisis and that worries me. I can tell from your writing that you have so much within you and a fabulous mind. Please hang in there. It sounds like your therapist is a good fit and that your family doc is at least compassionate. Keep going to them and keep searching for things to try (there is a lot of truth in 'the squeeky wheel....'). It sounds like you're used to being a really high acheiver, so make sure you're not being too hard on yourself. 5 minute walks, sitting outside in the sun and fresh air, hot baths in epsom salts, eating healthy foods ... little things that might have small impacts, small steps. Little things to do while you try to find something bigger that will help in a larger way. Ask around in your area for a compassionate doc - s/he doesn't have to be the best, I think kindness is better. Keep writing - I think that's a great outlet for you and you can use dictating software when you are in pain. Don't worry about it being as good as it used to be. The more you write, the better it will get. And the writing style is part of this journey and who you are now - let the writing express that. Let that part of you shine. Hugs.

 

[DoobieBrother]

Catherine, you are not alone in your situation. I know this platitude sounds empty, but I found some solace when I was finally diagnosed; at least I knew it wasn't something fatal, that I was not loosing my mind and that there were others in the same boat. You are indeed very young to be in this situation. Ir is criminal that your medical support is as useful as hair on bacon! Would it be possible for you to find another doc, someone who will listen, someone who will prescribe what you need - opiates. yes, I kow that is a dirty word to some, but you did experience relief when taking that Perc, and I can tell you that without these drugs I'd probably not be here today.

Have you tried ingesting cannabis extracts ? I've found that no other method is even close to being as effective as eating my medical marijuana. The key is finding a strain that has a high CBD content, then extract the goodness using butter or coconut oil. I was reliant on heavy opiates for the first 5-6 years, but have since replaced 90% of big-Pharma's poisons with a plant! How great is that! Oh, and with the right strains, you will usually not experience any 'high', especially over time as you gain experience in titrating and timing your cannabis intake.

Hope this helps
DB

 

[medicmurphy]

Not to be a 'downer' but my "spidey" senses are waving a caution flag.....you are a 20 year old who admits to drinking too much if the parents would let you, (you admit it takes a lot of alcohol) and you helped yourself to a 'rents Perc in order to cope. From what you describe in your posts I sense your approach to life is "all-or-nothing", ie "Olympic caliber" fitness, running 50 miles a week after 5-8 hours at the gym etc. Find a Dr that will treat you as a whole, not just hand an RX for opioids. You're way too young to embark on this long road with Fibro, a chronic condition that will not go away, by drinking or taking addictive pain meds. In the end you'll be a mess and a head case. You need a Dr to help you long term which takes patience.

Dr's do prescribe opioids but they are discerning to whom they prescribe it too. They more than likely will not for a 20 year old with a long term chronic condition where other treatment modalities may be helpful.

Don't get me wrong, I was only a few years older than you when I was diagnosed. 26 years later I am still living with this. Biggest hurdle we have is to get a handle on our mental approach to Fibro and push through it. You may need a good mental health provider as a part of a solid treatment plan with a goal of getting back into life and living it. I think there's more to your story.

 

[CatherineTheGreat]

Murphy:
Not to be a 'downer,' but I have in fact tried doctors who "treat [me] as a whole." I've been to physicians and naturopaths and neurologists. I've tried Cymbalta, Lyrica, Savella, Effexor, Prozac, Celexa, and Paxil. Not only did none of them help my fibro, they made me a "head case." My mood improved astronomically when I stopped taking anti-depressants after years. And, as I already stated, my therapist helped me through my depression and PTSD, which was largely unrelated to my fibro. I tried Gabapentin, LDN and muscle relaxers. I've tried dozens of "supplements." I tried numerous diets, gluten-free, paleo, etc. I tried massage, homeopathy and "chakra healing" when I got desperate enough, and my doctor was out of ideas.

As for the drinking, first of all, I'm 21 not 20, which is the legal drinking age here. I also never said I would drink all the time, merely that it takes a lot to find meaningful relief. I've been way-too-drunk once in my life and haven't done that again. I have a (almost empty) bottle of kahlua next to me and I don't have any desire to crack it open because I'm saving it for a day when I'm worse.

As stated, aside from apathy towards getting better, (largely from a lack of options) I'm quite happy. Content might be too strong, I'd certainly like to get better, but I know I can't. My approach isn't "all-or-nothing." I would gladly cherish a small improvement to my quality of life. I was a sick and isolated child. When I got better in my late teens, I loved fitness, I found community in running, and I was driven to succeed in school. I know and accept that I can't have that anymore. I'm not saying "woe is me." I only offered those details as a way of just wondering aloud if anyone has had a similar experience or outlook.

I'm sorry if I sound rude, I simply don't appreciate assumptions that I'm an addict or an addict-in-training. I know first-hand what addiction can do. I've lost close friends to heroin overdose. But, my quality of life can't really get a whole lot lower, I'm functional (as in able to sit upright and occasionally walk down the hallway) maybe 4-6 hours a day. I'm willing to risk addiction to improve that.

And to answer your question Doobie, yeah, I have tried that. It's somewhat pleasant but in my case it doesn't really mask the pain, unfortunately. I still use my vape pen from time to time as a method of distraction if not relief. (It's legal here, and much cheaper than edibles.)

 

[medicmurphy]

I was not accusing you of being an addict in training. Perhaps how you worded yourself may have given a wrong impression. It did not enter my mind about the legality of a drinking age. In Canada it is 18, thus whether you were 20 or 21, I could care less. That's your choice. Also, I never concluded you had a woe-is-me attitude. All I am saying is risking addiction (in your words) is unwise at your young age. You have a whole life ahead of you. Fibro sucks. We all have bad days and many of us find ourselves housebound at times. However, being stuck in the house at 50, 60 or older is a different kettle of fish than 21. You were in college once. Don't you want a career? Or a trade? Something? The last thing you want to do is mask your pain. Treat it. Don't give up. Having had this condition for 26 years I fully understand the emotional and mental component and how it impacts. The pain sucks but the emotional side debilitates us even more. If I pee'd you off by encouraging you to attack this, my apologies. IMO you're far too young to acquiesce to this condition. I say this because your thread title is "Should I care". 'Nuff said.

I was dignosed not much older than you. I had 3 wee kids running around the house. I went on to a post secondary education, then working full time. At diagnosis my Dr told me if I wasn't in excellent shape I'd be bed bound. Because I had youth on my side I didn't give in. I yearn to have that youthful drive back. Notice I said "drive", not energy. I worked full time while attending full time studies. Thought I'd die. Now, understand, I'm far from super human. Take advantage of what you have going for you. Without a doubt you can get some of your life back. I'm sure you don't want to face your future of playing the occasional video game ( again, your words).

 

[CatherineTheGreat]

I'm happy for you. Being able to work, to study, to have a family. I do want that. The first two don't seem to be in the cards for me. If I should care can you answer part two? How? Everyone I've seen has been unwilling or unable to treat me. I was putting an enormous financial burden on my parents when I was running around seeing doctors. Even if I could somehow just will myself to get a job or go back to school, (I can't, I tried) I'd be much less happy than I am now due to an increase in intensity. Maybe if I was older it'd be even worse, but as best I can tell youth hasn't been much use.

 

[medicmurphy]

In the 4 years you've been diagnosed you've been on a lot of different meds. One of my questions is, have you given some of them enough time? Some take months and months to build up blood levels. Along with that is the "tweaking" of doseages . You've seen a slew of Dr's. This condition requires patience. Learning ones limits. To be house bound in a realitively short time is disconcerting. You mentioned you've been treated for PTSD. Having lived with this diagnosis as well (job related), I completely understand the subliminal toll it takes. With all due respect you are coming across resigned to a hideous fate, when in all reality you CAN have a good future. Many on this forum, from what I have gathered in a short time, are middle aged, still working, raising families and enjoying some social life and interests. Yes, they comment about their pain and fatigue. They describe their frustration. Yet, they are still living life. AND, they are twice as old as you. Do not underestimate that youth can be your ally. In all estimation, 4 years is relatively short in the scheme of things.

As an additional note. In your first post you mentioned you went off all meds including one for depression. Abruptly discontinuing such a med can spiral one into worse depression. Chemically it can mess with you. I'm sensing this in some fashion is happening. To me, you're presenting as depressed. Not that I don't understand the sense of futility. In spite of that recognized emotion you do come across depressed. Perhaps consider going back on the med. When one is emotionally stronger, one can better tackle the Fibro. Please revisit going back on it.

 

[FlorenceNegron]

Yes, taking care from early stage is always better.

 

[diamond]

May i just chip in...i have had fibro for 10 years..the first 7 i wasnt able to work and had about say 1 hours of walking in me on a good day ...maybe more if i rested and then pottered about later and could do housework in bouts of about 30 minutes at a time resting to reduce the pain in between....and in total on my very best days i could go out for about 3 or 4 hours but much of that was sitting in the car with the seat covered in a duvet to make it comfortable as even sitting my bottom back and legs arms would ache and burn sometimes terribly..my partner did all the driving as i had to give up 2 years into fibro. The repetitive movement on my feet legs doing the pedals and arms turning the steering wheel would stir up the pain the longer i was out ..so after 20 minutes i was done and had to get home ..and lay down with hot water bottles to try and get the pain back down to a manageable level.

I didnt just give in...i decided i would walk daily instead which i did for about 40 minutes either to my local shop or out with my partner.

Over the years new symptoms added the party interstitial cystitis, vulvodynia, tmj disorder migraines tinnitus..all randomly and sometimes lasted days sometimes months and tinnitus very loud was permanent since 2009...sometimes it reduces in volume to something most people think of as tinnitus as in buzzing and ringing but the loud is like a jet engine although i have trained myself to ignore it pretty well ..its way louder than almost full volume tv.

Then almost 3 years ago i had a big emotional upset and long story short my fibro went down hill rapidly and all the intermitant symptoms became daily and permanent.

I could not walk barely to the kitchen or stand long enough to make a drink or easy meal...sitting in a soft arm chair not only is extremely painful all over but i didnt have the strength to sit up for long...and migraines face and jaw pain so bad eating and talking became very difficult and still are...i use ice after a chat on the phone and have to go lay down in silence and quiet to try and manage it.

Some days i can get up for an hour or 2 or a bit longer and get a few little jobs done, others i feel so weak and ill i can hardly raise my head off the pillow and put off brushing my teeth as it is such an effort and standing for few minutes is agony....lol i do it though I'm just saying this is how it is....

I was the most dynamic career girl, loved physical activity, house proud, adventurous holidays, took great care of my health and appearance, love gardening my half acre garden....but i speak the absolute truth as to my current condition...which is house bound and often bed bound.

Its not a case of trying harder ..i was already doing that for 7 years and still enjoyed my life with all the symptoms and pain i had and found a way to manage enough to have some good days or hours...but working would not have been possible.

So for some of us sadly things just get so bad nothing much helps..even if the pain is tolerable I don't have strength to do much and typing and emailing a friend or a call with friends is my main socializing...sometimes im to exhausted and my hands hurt to much to do that for long.

Its almost like another level of fibro that even i would not have understood before this downturn..except i did get odd spells like it but i would return to a level where i could be up and achieve things albeit not at the rate of a healthy person.

It doesnt mean we are negative it just means after years like it its hard to be hopeful..so i can see how perhaps Catherine feels.

I never drink so i cant comment on that its just not on my radar and i do so hope Catherine your health does improve....if possible try a little exercise like you say around the house and maybe in the summer venture into the garden.

My legs actually seize the more i walk..like the muscles and joints get tighter and feel like they are grinding together to point i cant move..it's not something you can push through as the more you push the tendons and muscles react like they are injured and then i cant even weight bear....i don't know how else to explain and wonder if anyone elses body reacts this badly.

Ive had a broken foot and i can honestly say its the same as the pain of trying to walk on my broken foot just in most of my body most of the time...and even doing nothing the same pain...so im constantly trying to get off my own body and the parts taking my weight in bed or in a chair or standing.

I only weigh 126 lbs so not heavy and 5 feet 5 inches.

I do laps around my large living room when i can on any better days..one minute i can do a few...next i am hobbling and almost collapsing..its not a choice and its not from not trying.

I know the difference because my fibro was not mild for 1st 7 years but i wasn't stuck like this 24/7....just an insight for you guys that are doing better.