Old timer with Fm and just tired, worn down

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TomT

Member
Joined
Jun 14, 2017
Messages
13
Reason
DX FIBRO
Diagnosis
04/2000
Country
US
State
Nevada
Hello, I have been trying to overcome this and just be me again for many years now. I used to be very active, hunting, hiking, coaching sports. Being a good husband and grandpa. I have been married now for 32 years, I have an incredible Lady. My wife Sally has supported me in every way even though I am less and less able to support her.i have been prescribed years ago by a pain clinic Fentanyl pain patches for day to day pain. 1 patch every 2 days and Oxycodone for breakthrough pain. My insurance company decided tha after 3 years that they really were only required to provide a patch every 3 days. That was the beginning of the end for me as I usually only have 1 good day out of 3. The Medes are beginning to lose their effectiveness now and all I do is wait for the pain to go over the top again. I have explained to my sweetheart that I won't be able to do this much longer. She said that she understands and just wants to enjoy each good day left. I can't lay in bed in such pain and call that living.
 
Oh Tom i hear your suffering as my fibro is also severe....i had 7 years of managing it but still i think i was not a mild sufferer. Now i have zero good days for lat 2 or 3 years and struggle to be up and even doing things small around the house...and although i loathe it .. I end up back in bed or at best sitting up trying to get the pain back to vaguely tolerable.

i have also tried various meds but with little success..at least you have found something that helps.

I dont understand the US system and how an insurance company can over ride what a doctor agrees you need but i know it happens.

Is there no way a specialist can get involved and insist on your needed levels of meds for you to have some quality of life?
Also what if you told them how its affecting your mental health being in so much pain and explaining you are feeling desperate and are at risk....unless i have misunderstood you are saying you cant carry on living in so much pain.

Surely a psychiatrist could jump in or a pain specialist and put pressure on the insurance company from this angle.

The problem with opiates is we built tolerance....if only there was something that permanently reduced the pain to a tolerable level.

Have you tried any other alternative types of meds added to your regime ..like gabapentin or lyrica or cymbalta.

I am the worst at trying strong meds as i always get bad side affects but you are already taking things that are pretty powerful and maybe as a man are more able to tolerate them without severe side affects.

My heart goes out to you and your wife..she sounds a great partner..hugs to you
 
Hello and thanks for the reply, Life used to be much better, before my insurance company decided that they no longer needed to provide an effective number of Fentanyl patches. I have explained to them in so many conversations "how much time I now have to spend in bed". The truth is that they couldn't care less. For them it is about keeping their costs down. as the man of the house sometimes there is no way around making necessary home repairs. A few days ago our water heater started leaking. There was no choice but for me to replace it. After letting it leak for a few days until I was physically able to replace it, I was able to complete the repair after loading up heavily on pain meds. I knew that there would be a heavy price to pay for the exertion. I spent the next 3 days in nasty pain. I can't sleep, eat and don't want to move. I have always tried to celebrate any kind of good day or even hours of being pain free but after so many years of this I find that I subconsciously just count down until it comes back. I can't sleep, eat and don't want to move. I go days without eating, pain makes me very sick. I have always tried to be thankful for any small respite but I am just tired and feel worn down. My Dr. asked if I have any issues with depression, to me depression is a negative reaction to a perceived problem that may not exist. This seems to me to be an honest reaction to something very negative and real. Thanks for letting me vent. This has just gone on too long for me.
 
Tom, I am sure you have thought of this but take the patches that the insurance pays for and then pay on your own for the balance of Fentanyl patches that you require. That's what I would have to do. You are in enough pain that you must take the bull by the horns (and then rest for three days from the exertion of doing so). Your post made me so sad as I can feel that you have just about had it and that is an unsafe place to be. I take Percocet for mine and my insurance covers it. If it did not I would BUDGET the Rx into my monthly outlay to be sure I had it. It helps that much to live with this. I have major depressive disorder, too, that is not helped out one bit by the fibro and other BS I deal with. Sally sounds like my partner Lee. He is a godsend in that he supports me when I doubt myself and my ability to go on. He says, "I love you, need you, and quitting is not an option." I don't know if I would go on if I didn't have someone who cared so much about me. You feel in-valid when you are in pain and feeling useless - not able to be the people we used to be. I am definitely not growing old gracefully. I am 67. I have a 90 year old father who takes no medication for anything he is that healthy! Please find a reason to go on for Sally if no other reason. Imagine her sense of loss if you weren't here as you two sound very very close. There must be a reason we are all suffering like this. I have learned to let the smallest of events make me happy. I no longer have HUGE goals for my daily happiness. I bought a set of 2 pound weights and sit here at my PC and do exercises with people on YouTube for company as they won't judge me and how slow and silly I am when I do them. I also have two cats that make me extremely happy. CATS!! When they sit and lovingly lick each other it makes me swoon with happiness that is how bad off I am I don't know what I'm trying to say, if I am even helping you out of your doldrums. I just felt like reaching out to you....{{hug}}

Sandra
Dx'd in 1997
 
Hi Tom,

I relate to what you are saying about feeling tired and worn down. I wake up most mornings more or less wishing I hadn't woken up. But I carry on for the sake of the animals that depend on me, and I imagine you do the same for your lovely wife's sake.

I just want to mention one thing, and please understand that I am not wanting to refute how you see things at all, just wanting to help. You say that to you depression is a negative reaction to a perceived problem that may not exist. and your reaction is to something completely real. But depression can come on as a reaction to something that is real, as well. For example, my beloved partner died four years ago this month, and I have been severely depressed ever since. Prior to that for several years I was very happy. My depression in this case is a reaction to something real. Of course, one could call it grief instead of depression, but at this point it feels like depression to me, after 4 years.

I only mention this because some people have found that anti-depressants help with fibro, and it might be something worth trying. I want to try it myself, but am having a hard time finding one I can take and that the insurance will pay for. Maybe if you did tell your doctor you were depressed he might prescribe one and it might help. Well, who knows. Just a thought. I really feel for you. I know how worn down one can get.
 
Hi TomT,

I hear your pain and I'm sorry.These insurance companies are just out for the money and don't understand or care about the patient in pain.
I hope you can find a substitute for your Fentanyl patches.



Hugs,



Sagey
 
Hi TomT,

What Diamond said above might work.If you could put in appeal into your insurance company with support from your doctor (letter).Thst probably could work.Cant hurt to try.




Sagey
 
You are without a doubt a rarely fine, kind Lady. I am blessed to have crossed your path. Thank you for your very kind words. I appreciate your suggestion regarding how to get extra Fentanyl but I am afraid that it isn't legal though. I spent many, many hours trying to explain to my insurance company that according to the information packet that comes with the patches that many patients being treated with them will require a new patch every 48 hours rather than the 72 hours. They responded that they aren't legally required to provide more than 1 patch every 3 days, regardless what my Dr. and I require though. They have shown little to no interest in my well being in comparison to maintaining healthy profit margins. I have tried in every way to come up with any type of solution but in this matter there is no solution. Thanks.
 
I appreciate your kind thoughts and my heart goes out to you as I do know how impossible it would be for me to overcome the loss that you have endured. Thank you very much. I take Duloxetine for my Allodynia and it helps with my sensitivity to touch, it is also an antidepressant but I am just unable to think positively about continuing with tomorrow's that will feel like today. I have been feeling steadily diminishing pain relief as my body becomes more and more accustomed to my pain meds. Thank you sincerely.
 
My Dr. and I submitted an appeal to the insurance company and because I am a medically retired civil servant another appeal to the Government, the Government ombudsman was unable to help and deferred to the insurance company. They replied that they are already meeting the minimum requirements and aren't bound to supply anything further. I understand how insane their rules are but their only real interest is maintaining healthy profit margins for their stakeholders. Thanks though for your kindness.
 
It is so disgusting meanness with money costs a human being to be in pain.
 
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