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my husband is tired of hearing me complain

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Posted 5/10/2012 4:55 AM (GMT 0)
my husband is tired of my complaining ...I hwve has health issues for about the past 10 years ...started when I hurt my bqck...since then I have been diagnosed with fibromyalgie, barretts esophagus had rfa. then nisson surgery after that I had surgery for a large bone spur on my shoulder, dental problems untill I found a dentist that listened to me and fixed the proper tooth ..I also have lupus ..it been such a hard time for me because I also have such horridback pain I am almost completly bedridden but do manage to get myself up to clean up the house just the bare nesseties...I am unable to do any of my hobbies I used to love and can't really sit at my computer anymore because the only position I don't have pain iswhile laying down ...today my pain was so bad I called and made 2,doctor appointments to try and get to theroot of my awful back buttand leg pains ..iam on fenanyl patch but the third day is so hard to get through today I only made it to 5 pm and had to put on my patch that I am supposed to change at 7 am tomarrow...he is very stressed over how much all these docs medications and surgerys have costed us and dosent understand why I can't just deal with the pain and put it out of my mind...Ibecause he says he has pain too, my pain is at a level that its imposssble for me to do that today a definate 10 I would of went to the er but didn't want to seem like a whimp as usual ...I. we have a little boy almost 6 years old and my husband thinks my issues are tramatizing him mainly because I am bedridden so much of the time ...this is so awful and I feel so guilty about not being healthy and well it just breaks my heart...I know my whole family is sick of hearing how sick I am nobody calls to see how I am feeling or if I need help except my daughter but she has health issues of her own and honesty its harder for me to have company than to just grin and bare it I just don't even have the energy to have people over for any reason because sitting on my butt gives me so much pain ..I think today was so bad because my niece came and stayed the night and lifting her baby and playing with him really did a number on my back....I guess I am just venting but I am so sickbof being sick and in pain.and I hope the appointments I have made today for the end of the month can help get me better..because I just dontvknow what I am going to do if I.continue to be sick and my husband gets really tired of dealing with me ..I know I am tired of my own body so I don't blame him for feeling this way ..we have been together for 25 years so he knew the healthy me...and he said if he didn't love me he would of already been gone...I just don't know how much more of this he can handle and he has the health insurwnce so I would be completly helpless without him ...anyways that's the short condenced version of why I am here...I am seeing a proctologist the 21st then the spine pain center in portland oregon at the end of the month ..I also called about a free mri review from the lazer spine intitute but have since read some not so positive stuff about them so I don't think I will be following that through... thanks for listening ..I have been reading others posts and they are making me feel less alone ...
Posted 5/10/2012 8:50 AM (GMT 0)
I know what you are going through. My bf does not understand my pain nor the difference between dependency and addiction. It is very tough. I hate to fish advice when I have the same problem but I truly think you might benefit from counseling. You've been together 25 years and in pain ten of those, he might understand better if there was a way to talk it out. I hope that he will go with you and that it will truly help him understand. Good luck to you.
Posted 5/10/2012 2:08 PM (GMT 0)
I'm sorry you are going through this badreflux. I can only guess, but you wouldn't leave your husband if it were he going through the chronic pain would you? From what you wrote, it seems to me you and your husband are very much in love. Because you love him so, you don't want him to see you suffer and you don't want for him to have to curtail his lifestyle because of your pain. (Believe me I have these same issues.)
True love is strong and you will both make it through this supporting each other when necessary.
Posted 5/10/2012 2:28 PM (GMT 0)
First go and look for support groups in your area, do a google search for local fibro support groups
and take your hubby with you...also when in such pain for so long some of us on here do go and
see counselors, counseling can help, think about that, but look for a counselor that can help
with chronic pain issues in your area...You've been married for 25 years and that's a great accompishment
but it does take work...this year will be my 26th wedding anniversary...
Anyways, welcome and take heart the are many advances in medical sciences each year
that hopefully someday soon they will find a way to better treat chronic pain...
Many many well wishes and do keep us posted as we do care and come and vent here as well....
Posted 5/10/2012 3:23 PM (GMT 0)
thank you for your replies...yes we do love each other very much been through a lot of stuff in the past 25 years ...I will look into groups I live in a very small town but you never know there could be something ..I think we can get free cousrling through our insuance too not sure but seems like I remember reading something about that..I will look into it...I have so.much guilt about being so sick all of the time I think it would be diffrent if we were like 70 or older but I am only 44 and been like this since I was 34 I met my hubby when I was 19 ...he is 56 and healtery than I am except he is losing his hearing and has thyroid issueehe also has pains but I don't think he realizes that my pain completly rules my entie life everything I do well can do is because its impossable for me of if I just grit my teeth and do things I pay so severly for them for days or weeks as I am sure you all deal with to its just a revolving thing day in and day out with no end in sight :-(
Posted 5/10/2012 4:58 PM (GMT 0)
Hi Badreflux and welcome to the chronic pain forum. My heart goes out to you as I hear the desperation in your writing. I know Chart suggested finding a support group for the Fibro, check with your local hospitals, a lot of times they have info about support groups.

You know you have an awful lot on your plate in the health department. That makes things so much rougher than just having CP to deal with. Even now at times I will still get overwhelmed. I think you are being way too hard on yourself, which we usually are. We tend to think we are suppose to handle everything that is thrown our way and sometimes that just does not happen. I will tell you this, had it not been for a good psychologist I probably would not be here today. I felt every kind of negative emotion coming down the pike and guilt was a big one, it nearly ate my lunch. I too have multiple issues in the health department and any of them can bring me to my knees in a moments notice it seems like. Get yourself some help and do not be embarrassed about it either. It would be great if hubby is willing to go too.

What kind of dr is taking care of your now? You have low back pain and talk about pain into your buttocks and legs. That type of pain is usually from nerves being pinched or compressed. Have your had any testing done on your back like an MRI? There are medications given for nerve pain called Lyrica, Neurotin & Cymbalta. Have you been tried on any of these meds, if not talk to your dr about them. These meds help a lot of people, including people with Fibro on are on these meds. Something you may not know is normal pain medication like your Fentanyl does not have much effect on nerve pain, that is why they prescribe the meds I spoke about above.

You are right, you are too young to be in the shape that you are. Its ok to take baby steps to get there and it is possible. Take things a day at a time. I know you probably don't want to hear this right now, but you really need to learn how to distract yourself from the pain so that you are not concentrating on it only. Even if it is listening to some soothing music, reading a magazine, or even have your little one read to you. When you feel you need to vent or talk pop on the forum here, that is what this place is for.

What is the treatment at the Portland place about? yes, you are right to stay away from the Laser Spine Institute, a lot of negative things involving that place. Any time a place sounds too good to be true it usually is. They are a big money making racket and it involves a lot of cash money. Not all insurance companies will pay for them either.

Keep us posted on how you are doing and take care....Susie
Posted 5/10/2012 5:21 PM (GMT 0)
Thanks Susie and yes your right I was pretty desperate last night... I am better this morning still in pain but the fent did take the edge off and I am taking ibruprofin which I hate to do because of my stomach issues but I have to function a little bit ..The doc in Portland is a spine pain management doc and the lady I talked with on the phone said that she though would be the best Place to start...I just want to know whats wrong and can it be fixed... I couldn't see the other kind of doc and this doc at the same time because of their rules ?? I am not sure what exactly that was about ...

this morning I called my primary and am going to try to get in to see a neurosurgen ..I have been on cymbalta but really seen no improvement on it after a year so I weaned off in January its so expensive...I was on loratabs for about 2 years before my rhumey doc switched me to the fentanyl because they were just not helping enough and of course I was taking more than I should have I was prescribed 4 a day and sometimes on really bad days I would take 8 because I would have to take 2 to even touch the pain ..

I just pulled my MRI report from april 2010 I am going to make a new post to see what you guys think I know your not doctors ...my docs think that I shouldn't be in as much pain as I am according to my MRI ..I dont have alot of faith in our hospital imaging department though because when I had one for my shoulder it said small spur and no labral tearing it was actually a large spur and I did have labral tearing ...then last year after a horried episode of trying to vomit which I cannot due to my nissen surgery I was having a hard time swallowing I went in for a barium swallow test and me and the guy doing the test seen the barium stop and not go down he said wow that's not right ..but when my doctor got the repost he said everything was fine I had already called my gastro and scheduled a endoscopy and he had to dilate my esophagus then my swallowing was fine so that why I dont trust that they see everything or write it down in the report I know it sounds crazy but it really happened ..I ahve so manuy nightmare story of my health from the past 10 years

I know my husband is very scared for me and that probably adds to his frustration .. there has not been one thing I have complained about that has not turned out ton be a pretty serious problem but its seems I have had to do all my own research to find which doctor I needed and in some cases what tests...... Is that normal for you guys too ?

I also have sever sleep apnea and sleep with CPAP...

Thanks so much for all your replies I feel so alone and really have no one to talk to who isnt tired of hearing about it :-(

Ok I am going to go type my MRI report and make me a signature Thanks again for being here I will try to be of any help I can to others here as well..
Posted 5/10/2012 5:56 PM (GMT 0)
There are so many things I want to say...

I don't know your husband...but if I may...

He must be a really good man if you've been together for 25 years. 25 years is nothing to sneeze at, even couples who haven't gone through what you two have...can't make it that long.

And I don't want to assume but...

I'm sure your husband isn't so much "tired of your complaining" as he is tired of not being able to take the pain for you...of not being able to do anything for you, of not being able to make it better. The good men HATE to see their families suffer, and feeling powerless on top of it well...it can make them downright grouchy.

I've never been to counseling, but...if it's an option for you, it might allow both of you to vent, and to let go of some of the fear, anger, worry, guilt, and emotional pain you both have...

If not counseling, then maybe you can find another way to do that. Sometimes we get so wrapped up in being in pain, and trying NOT to be in pain, and trying to hide it or ignore it...that our emotions get all tangled up and lost somewhere.

It sounds to me like you really need to de-stress, take a step back from everything, remember why you got together, remember who you are as a person, take a little of your control back. When you have no control, everything is worse.
Posted 5/10/2012 6:26 PM (GMT 0)
My chronic pain, ie, bone pain, fibromyalgia, neuropathy, turned out to be vitamin c deficiency, aka, scurvy.  It was brought on by a combination of low stomach acid which was being mistreated with antacids, further lowering the stomach acid.  That along with overloading on advil because of the pain turned into a serious absorption issue.  Since humans are one of the few species on earth that do NOT manufacture vitamin c, the c in my multi-vitamin (only 500 mg) was not enough.  This was coupled with the fact that I am traditionally not a citrus person.  I basically had no other source of vitamin c in my diet.  There was no doctor or specialist that found this and I suffered for 5 years.  I figured it out when I heard, for the 2nd time from a acupuncturist, that my stomach was the source of my problems.  I understood that my stomach was probably a low acid issue but I didn't know what the consequences were with taking the antacids.  I researched low stomach acid and found that scurvy was on the list of possible problems that can be experienced with low stomach acid.   Scurvy has all of the symptoms that I was experiencing.  The next day I ate lemons with my meal and it was immediate.  I am now bulking up on vitamin c and making sure that my stomach acid levels are kept up and I have no more arthritis, no more myalgia, no more neuropathy.  My skin looks like it did before this started happening and basically I feel perfect. 
Posted 5/10/2012 6:31 PM (GMT 0)
Scurvy also causes massive dental problems.
Posted 5/10/2012 6:40 PM (GMT 0)
Thank you Lexi and yes I think your correct 100% I know is scares him seeing everything that I have been through the past years I know it would really scare me to see him go through all this .. He really is a good guy I guess its like you say the stress on both us is just too darn much sometimes .... TK I am on my way to the grocery store and I am definatly going to get some vitamin c I was on strong strong antacids by the time I got my sugery and lived on tums and prilosec for probably 10 years before that my stomach was so bad it scared up my esophagus so badly that to doctor could not even get the endoscopy camera through to look in my stomach that was after dialating me 3 or 4 times but the boogie only pushed the scaring down it didnt open it up he did the balloon kind when he discovered his mistake and then I was able to eat again that was a nighmare not being able to swallow my food and be so hungry I was eating alot of dairy cause its all smooth I went to a naturalpath end of last year and discoved I am very allergic to dairy I swear its just been one thing after another with me ...anyways I am going to get some Vitamin C ...I also was very low on Vitamin D and have been supplimenting that and I have adreanal fatige ..I told ya I am just falling apart over here ...Thanks so much for the replies again
Posted 5/10/2012 7:40 PM (GMT 0)
Hi there..

Sorry to hear of your troubles...you have certainly gotten some great advice....

The only issue with seeing more than one Dr. is if you are trying to get narcotics from both of them. So it's really about only having one Dr. prescribing those at one time...

But you are certainly free to go see an Orthopedic or Neurosugeon to find out more about the spine issues.

I know you mentioned that when you were on these....you would double your prescription of Lortab and take 8 when you were supposed to take 4....

And then if I am reading your post correctly...you are now putting your Fentanyl patch on earlier than the 72 hours...

I strongly urge you to contact your Dr. to make sure they are ok with this...If not...you will run out early....as well as drug test you and you may have more medicine in your system than prescribed....

So....I would hate for you to get kicked out of the Drs. office and then not be able to get any opiates...

So please contact them immediately and make sure you write down the day/time that you speak with the Dr. and that they ok you to change your patch early..

As Stray mentioned...there are other nerve pain medications that you should try as an opiate is just to dull the pain...but doesn't go after nerve pain at all....

So...hopefully you can get an appt. with a Neuro or Ortho soon and maybe get some new testing and find some other non narcotic modalities to help with your pain...

Wishing you well...
Posted 5/10/2012 11:53 PM (GMT 0)
I wrote it on my calander and called my primary doc this morning I only have my rhumey doc doing my prescriptions so that's not a issue and usually I don't do a patch early the one I had on I discovered was halway unstuck so I think that was part of my issue yesterday...I want off the medication I hate living my life revolving around these stupid pain medications so I am not even planning on getting meds from the neuro unless maybe one of those nerve type medications and I only use 1 pharmacy for all my meds and am upfront with all my docs about what and when I take my meds..
Posted 5/11/2012 12:27 AM (GMT 0)
BadReflux, the pain mgt place in Oregon may have what is called a Contract that all patients sign, all of them pretty much do this now. It sets out what you will do as his patient and that sort of thing. The big thing they don't want is a patient getting pain meds from different drs, using more than one pharmacy, agreeing to pill counts, urine testing and that sort of thing. If the patient does not follow the rules then they get kicked to the curb and then no dr will rx any meds. They are really strict now a days on pain mgt. The DEA has new guidelines and rules in place for drs rxing pain meds and most drs will not rx meds any longer because they do not want the DEA breathing down their necks, the drs are scared. This is why most of us see PM drs.

If you are having issues with your patch staying in place go the pharmacy and buy TegaDerm patches. Its like the clear tape they put over an IV site and it will keep the patch on and dry. I doubt really seriously the neurosurgeon will rx meds they don't really like to do that.

You know what you said about your hospital is terrible but this happens a lot. Many times we do have to advocate for care but thats ok, as long as we get the care we need and deserve.

I hope you can get some answers, just what I read on the MRI is enough to cause a person pain. Take care...Susie
Posted 5/11/2012 4:46 AM (GMT 0)
thank you susie I have heard that about pain mangement and that's not a problem for me I just want to make sure whatever is wrong maybe it can be fixed and i can get by with just the occasional motrin or something. after doing this pain meds for a couple of years now I know its something I don't want to do for the next 40years unless there is no other options I hate it and the stigma that comes along with it...I will keep you posted on what happens....
Posted 5/11/2012 1:47 PM (GMT 0)
I understand what you are saying about being on medications, we have all been there before. But, be as it may, if this is the only way to have some quality life then so be it. Few people realize I take narcotics let alone have a pain pump implanted. I don't look any different than the next person. I learned a long time ago, the fewer people that knew about my health issues the better.

Keep us posted....Susie
Posted 5/11/2012 2:26 PM (GMT 0)
A lot has been said on this thread;  A lot of great advice about seeing a counselor and dealing with your feelings.  I quite agree.

My husband and I have been together 46 years, 43 of them married.  Most of those years, I have been dealing with health issues and chronic pain.  It plays a big stressor on a marriage and relationship.  Both my husband and I have done counseling and I have to say, it probably did me the most good.

My husband is a wonderful man who takes very good care of me, but does he get sick of it sometimes?  You bet!  But I do what I can.  When I am feeling up to it, I cook for him and I treat him very special and give him lots of attention.  Now this is hard when I am in pain a lot, but I try to be mindful of his needs. 

Our biggest problem is my lack of concentration and its effect on our ability to communicate.  It's a struggle, but somehow we get through it each day.

I have shared this with you, hopefully to help you in some small way.  I know every marriage is different, as sure as people are different, but chronic pain affects us CP'ers in many similar ways.

God's blessings on you both.

Lindaloo

Posted 5/11/2012 3:09 PM (GMT 0)
thank you Linda for your input .....I have gotten freat advice from everyone you are so tight and I am lisenting with both ears wide open and so glad i came here to open up you all are so wonderful......I understwnd why cp need pain meds and agree with Susie the less people who know the better I am.feelingvmuch better abou it now...I have never had a pwtch come halfway unstuck so didn't realize how much worse my back had become since I started meds I think with summer comming on it would be a good idea for me to get some of those tagaderms for sure
Posted 5/12/2012 3:54 AM (GMT 0)
BadReflux when you decide to buy the TegaDerm ask your pharmacist for them, I have never found them on the shelf always had to ask the pharmacist. If they are out or do not have any, ask them to order them for you, they can do this. Mine was always ordered for me.

Be careful being out in the heat with the patches, if you get hot it can cause the patch to release too much medication and you will not feel so good. Not only that, if too much medication gets released then you are short on day 3. I went through this the summer I wore them. Thats why they tell you not to get overheated with them. Also, stay out of hot showers and off heating pads.

Susie
Posted 5/12/2012 4:07 PM (GMT 0)
So sorry to hear what your are going through! Hugs to you! It is hard for our signifigant others to understand if they do not have pain. I got remarried last summer and I have three children. I have good days and bad and sometimes my husband is amazing but other days I can tell his vessel is full and on those days I just try my hardest not to complain and even if its a bad day I at least make sure I make dinner and then he normally is better the next day. But I do feel when they get frustrated alot of it is due to fear for our conditions and for us. Worry alot of times in men comes off as frustration especially when they cannot make us better. Its a natural instinct in men to be the caretake provider and when its not working they get frustrated.
All we can do is take it day by day and hope we have some good days mixed in with all the bad. Also has he considered or you going to a therapist together we did that and it helped tremendously to have someone explain to him what I was going through and then have me understand his feelings.
Posted 5/12/2012 4:11 PM (GMT 0)
Also like a couple of other people said be careful getting your meds from different docs unless they both know. My doctor is amazing and helps me but he has a strict policy I only see him, I cannot get prescibed meds from anyone else unless it is the ER and then he has to know immediatly. They just do this because they are protecting us from mixing to many meds together as well as themselves from the FDA. So just as a FYI for the future I would stick to one doc :)
Posted 5/13/2012 2:57 AM (GMT 0)
I'm glad to hear that some of what we've said has helped a little. I know I struggle in my relationship as well, and most of it revolves around the pain, and the things I can't do.

He gets frustrated sometimes because he feels like he has to do EVERYTHING, even though he doesn't. On one hand he doesn't want me doing anything that might cause me more pain on the other hand he sometimes wishes I could do more.

He also struggles with seeing me in so much pain and unable to really help. A lot of it comes out as anger or frustration, because he keeps things to himself until he "blows" and vents everything.

But he's never left me and he sticks by me, drives however far for my appointments, does as much as he can, and I can honestly say that without him my life would be unbearable.

I too struggle with communicating, it seems like the pain has made my attention span miniscule, and sometimes the pain meds make me zone out so that I lose 10 seconds of conversation or I don't hear everything he says. Its definitely not something I do on purpose but its annoying and aggravating and doesnt help things nonetheless.
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