Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

We need some help understanding

beaverbbeaver Posts: 189
edited 06/11/2012 - 9:00 AM in Chronic Pain
I know this is a back pain forum but pain is pain. Niece has been in terrible pain for over two years now. Has been to many doctors and had all sorts of diagnosis but finally she has been definitely diagnosed with interstitial cystitis. She is on very strong pain killers and lots of them and she is only 100 pounds. She sleeps in until noon every day and spends a majority of the day on the couch. She does nothing around the house and her husband is taking up the whole job while having a very stressful job and limited funds.
We have seen a drastic change in personality over this last year. She was once an active, bright and giving girl. Now she is super critical of everything her hubby does to help but she also expects him to jump when she calls. She will not follow the diet that was prescribed and cheats on it almost every day. I know her hubby is stressed to the point he is regretting his marriage.

How can we help him and how can we help her. He along with us needs to understand what she is feeling and thinking. I know she is not lazy, I know she might be in denial and depressed. What can we do? We live over a hundred miles from where they live, her mom is not doing anything that we can see to help and he is overwhelmed.


  • SavageSavage United StatesPosts: 5,476
    ..all you are going through. You are right about .. pain is pain.

    I think it's pretty common to have depression going on with chronic pain. A lot happening and trying to adjust to the uncooperating body.

    Personally, I see a psychiatrist and therapist regularly. My thinking can start to ..well, be unrealistic at times.

    I have had so much guidance and therapy..and am so grateful..don't know where I'd be without it.

    So, obviously therapy is my suggestion to you for all involved. If your niece doesn't want to go, anyone caregiveing or caring would benefit greatly.
    Life has consequences and boundries even when we are ill. The professional guidance for adjusting and loving responses is priceless.

    Best of luck to you all.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • You live over a 100 miles away and you know all this of what she does day to day,
    And you know her mom aint doing anything?

    Maybe her mom knows to stay out of it and not get in the midle of there situation,
    Hopefully her mom is there only when they need her suport,

    And as long as she is seeking help from dr,s and she working in geting beter by finding the right dr i would stay out of it, If they were old enough to get married= For beter and for worse, In sickness and in health! They are old enough to work it out,

    So what if he has to jump when she needs something, Most guys have to jump when there wife wants something even when wife is not sick, He has a stressful job? Who dont!

    Its his job to care for her until she gets beter as much as she might have to care for him later in years,

    Best thing you can do is be understanding and be suportive and dont take sides and never judge, Many times moral suport can go a long ways but there is always a fine line in whats being suportive and what is geting too involved in there business,

    From a 100 miles away thats all you can do anyways , And even if you lived closer like her mom, only so much can be done without intruding upon there relationship,

    Best of luck to her and hope she gets beter soon,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Alex, we are not trying to interfere but we are worried that she is just giving up and yes, we fear suicide as she is so despondent. We also see the stress that her husband is under and worry about his mental health. He reached out to us because he does not know what to do- when to push for therapy and still realize that she is an adult and capable of making decisions for herself. He thinks that the pain killers she is on have altered the way she thinks and he is desperate. I came here to see if we could 'get' how a person in so much pain and on very strong pain medication is feeling so could send it along to him.
  • What medicarions is she on? I been on pain killers for 20 plus years for back condition so all depends if she is taking the medications as prescribed?

    I stay mostly on vicodine and muscle relaxer because i dont hadle the stronger medicarions well,

    People sometimes have trouble understanding why some of us take these medications because they dont have the day to day chronic pain themself,

    Also when medicarions dont work as we want them to and pain is still an every day life we sometimes take a lot of negative feedback from people on the outside such as family and friends,

    This is the only reason i am somewhat taking her condition in to consideration and giving it the benefit of a dought that this might be her situation,

    Of course i could be wrong for i dont know her, If by some chance she is over medicating herself then dr should be made aware and get her posibly in to in patient pain control treatment,

    Many times if pain medication is taken only for pain as prescribed its not always mind altering as some people might think,

    Not to say that it cant be mind altering depending on how much and what medicarions dr prescribed, If you feel she is a danger to herself then she should seek help posibly as inpatient pain control and people can set her up with medical profesionals to help her with this issue,

    This chronic pain is never easy to deal with and many suffer depression along with the pain, Some see medical profesionals to help deal with this when they find themself not being able to cope with this,

    Her husband might be able to get her in councling and go with her to beter understand how to deal with this kind of issue,

    Best of luck, hope it all works out,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Is her husband able to discuss his concerns with her doctor, or would the 'confidentiality' policy not allow this?

    You'll have to excuse my ignorance, but I am not familiar with the condition your daughter suffers from. Is it something that will heal eventually or will she always have it?

    If it's the latter, then I agree, some form of counselling may help her to come to terms with her new circumstances and find a better way of coping with it. Of course, she may not be amenable to this, but if she is aware that her close family love her and only want what's best, and are trying to help and support her, then she might think twice about refusing psychological support.

    Do you have any relationship with her mum that you could phone her and have a little chat about how you can both support her and your son? As her mum lives closer to them than you do, does she see them frequently so she can report back to you and keep the lines of communication open?

    I think it's commendable that you are being so thoughtful and understanding of their situation. It's awful when we live so far away and feel unable to contribute as much as we would wish, but short of going and spending a few days with them, there's not alot you can do.

    My dad lives about 4 and a half hours away and when he was ill last year, I felt so useless and redundant that I couldn't be there immediately for him, so I do understand your plight.

    Could you get in touch with any of her close friends and see if they are still in contact with her and could pop round for a friendly chat or something.

    Does she need to follow the diet because it will help to ease her condition? It may be that the medication is giving her too many side-effects for her to function properly and she obviously sounds depressed, so perhaps her doctor needs to be made aware that she's not improving and may need a review of her medicines.

    Do you both use Skype? Perhaps you can arrange to video-call her at the same time each day, or every other couple of days, or something. Then she and your son will at least be able to 'see' you and it makes it so much more personal. My daughter, who lives in Pittsburgh, myself and my husband Skype her every Sunday at 5pm - I think it's the most amazing technology and it's like she's in the next room to us.

    I'm sorry I cannot be of much help and hope that she will soon start to feel a little better. If she knows she can chat to you at any time, and that you're supporting her and your son, the best way you can from afar, it will certainly help them both I'm sure.
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • I've just realised it's your niece and not your daughter-in-law. Sorry about that, I should have read your post more closely.

    Will you please let us know how she gets on.
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • Its inflamation of bladder and mosrly woman have it, Can cause sex to be painfull and can be hard to manage, Here is the link i found by the mayo clinic on the subject,

    I seen a special on this condition on tv and i thought they had some new procedures they talked about, It can be hard on both husband and wife because not only woman suffer with this pain condition it gets between the husband and wife when its hard to be intimate,

    If i was in her husband place i would go with her to the specialists and also counceling to keep the relarionship healthy and have a total understanding of her condition so neither one becomes withdrawn from each other because of this,

    The right dr will help make the best out of the situation and she has to realise others have this and many from what i heard on a tv special go to councling so the husband dont feel rejected when its too painfull for the woman to have sex,

    Hope this helps,

    Link removed, solicitation not permitted
    Post Edited by Authority Member Liz
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • thanks for explaining this to me. I didn't know if it being "interstitial" meant that it wasn't treatable or something. I have never heard of this term before. I am sure it's pretty damn painful, whatever term is used.
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • At the beginning of any change and especially pain we become over-whelmed in these imposed changes and see a limited future for all the previous effort we put in. Even at our residential PM we were expected to commit every day, it is counter-productive to be disengaged.

    Some downtime is inevitable when in constant pain, it is about balance and proportion. If what is being done now, is not working then some change may be required and perhaps supporting her to see her doctor, or even together, managing pain is a team event and any carer needs help themselves to understand that mutual loss, knowing that someone cares is sometimes sufficient.

    We are not doctors, we know pain and all its presentations, what can be expected and when more professional help may be beneficial. Many here live with unimaginable levels of restriction, with humility and a smile.

    Take care we are glad to help anyone in pain and we do understand. John
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    At anyone and everyone who loved me way back when my #3 surgery didn't help at all. I don't really know the point of it all.
    But I was miserable and tried to make my loved ones miserable to.
    The possible point. Make everyone miserable so if I decided to give up and end it all. They might not be quite as sad. Maybe even glad that they didn't have to put up with me? Or misery loves company? Or maybe I just couldn't help myself from being that way.
    My wife sat down with me crying. And asked why would I treat her so badly? And be so cruel? She said, I've been there for you, done everything I can for you, and I'm not going anywhere. But I just can't take this anymore! And your kids and the rest of your family feel the same!
    I felt like an ass, and had decided that I would not be able to do the unthinkable.
    So I sought out help from my P.M. Dr. and asked for anti-depressants. We had a very good re pore and he asked if I would see a P.M. Psych. in his office. I agreed and over time made their lives and mine a lot better. And eventually, had each one of them go to a session with me, individually.
    My relationships with all of them was mended over time.
    The only thing I might have changed. would have been to have the sessions with them much sooner.
    I hope that maybe your niece could seek out help right away.
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • Jim,

    The ideas pain plants in mind. I often thought Ishould be mean and isolate myself cause it would be only way that my girlfriend could find a better life. I also thought I would be better off just being homeless somewhere. I also thought same as you, isolate myself from them so I am not burdon and if I do something to self it wont hurt them as bad.
    Jeez despiration and pain just can screw with your head so badly.
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • Howie mentions some individuals do think the unthinkable which is understandable at times, while they themselves are perhaps in need of more support, it seems a rational idea at the time and less so as time passes, when I needed MH support I was the last person to think I needed it, to me at that time my behaviour was rational and normal to me. The dilemma is not knowing we are so unwell and his good suggestion that getting help sooner may reduced the severity and duration of any given episode.

    We offer this support out of love and understanding, having travelled this route it is compassionate to ease the plight of others where possible.

    Anelsen, our loved ones should love us unconditionally the good and the bad, I am sure they do, your contribution here helps so many unseen faces to get through the day. You are a shining star in all our darkness.

    Take care John
This discussion has been closed.
Sign In or Register to comment.