Help for my husband

[LouBoo]

I have posted many times to this forum and found it really helpful so I'm hoping you guys can help me again. I am the wife of someone who has had an uphill struggle foe the last 8 years. My husband always suffered with back issues and in 2008 he had a discectomy L5/S1 and he was told after the op he would take 6 weeks to recover and he would be up and about - wrong! He has gone though countless spinal injections, has been on morphine and had a visit to St Thomas' to see if a spinal cord stimulator would work (which is didn't). He has been left with nerve pain in his leg. All of this has taken a toll on his wellbeing and on us as a family - we have two daughters who just want their daddy back! He has since been up to St Thomas' to see if he could go on the Pain Management Programme and has been told that he needs to see a Psychologist in our local area before they can take him on. It has taken over 4 months to see this Psychologist and in between all of this he feels very depressed has told me a few times he would rather die than be here. He has episodes of anger. I try to support him as much as I can but it is emotionally challenging for me as well. He is no longer on morphine as I believe it does nothing for nerve pain but he does take amitriptyline and gabapentin. He feels he is useless, can't get a job to support the family, is negative about so many things. I have said he should try relaxation - I just wish he could go on the Pain Programme as I feel this would really change his outset on life. I just don't know what to do!

[FFUDON]

I'm sorry to read about your situation, and of course I am sorry for the pain your husband is in.

I too suffer with agonising pain, burning and spasms, and often feel depressed too. But for the most I take day by day, some are better than others.

I think you are absolutely right when you suggest relaxation. I spent 2 weeks in a physio rehab centre last year, and they emphasised the importance of relaxation, and indeed now I have identified stress as a trigger for bad pain.

I know I go on about it, brainwave audio entrainment - but it works for me. I get as comfortable as I can on the sofa, the house is quiet and dark, and I sink into the best buy of last year, a 12 ft maternity pillow. I then have a small fan that I rest on my fore-head, it gently resonates through my skull, the whiring sound is quite hypnotic and the cool breeze feels nice. It takes practice to focus on the 3 elements, but after a while I have found that I am able to relax, sometimes, and it is beautiful while it lasts.

Hydro-therapy pools are fabulous too. There is one about 15 miles from me, and it is oversubscribed, but when I am able to get a slot, it really does the trick.

I'm genuinely hoping you all get some relief soon, and take a pat on the back for being there to support him, it can't be easy, so well done you!

[LouBoo in reply to FFUDON]

Thanks FFUDON. I try my best and I wish I could make a magic wand and make it all go away! The water is definitely a must and we go to the swimming pool as a family and it really helps him and he can actually pick my youngest daughter up in the water (something he can't do on land). Where do you find your positives though? How do you manage every day?

[FFUDON in reply to LouBoo]

I live alone, so i've only got myself to annoy!

Some days I don't manage at all, but mostly I do.

I have a very understanding boss at work.

I focus on what I can do, rather than what I can't do. - (in my 20's I played rugby union at international level, now in my 40's I struggle to put my socks on some days!)

And I always think about those in a worse state than me, there are plenty of people out there who have been dealt bad hands and are incredibly unlucky in life.

Here a couple of web-sites you may find useful:

painconcern.org.uk

action-on-pain.co.uk

Keep enjoying the swimming, it sounds like fun.

[Bananas5]

Louboo as someone in the same situation as you...wife of chronic pain sufferer do you want to message me and maybe I can share a few things I have learnt over many years?

Pat x

[Dexter1]

Has he tried Lyrica? I'm from U.S. So don't know if it's available there?

[Annunnaki]

Sorry to hear sweetie.

Beside everything else. Arnica will help. If you're in East London you can be referred to the London Homeopathic Hospital. It doesn't cute but can help. Acupuncture works with some people. Some trusts do it.

He is grieving the lost of his previous identity. Read on loss in dissability. You grieve for every single thing you loose, his mobility, his role as bread winner, hid view of what the concept of a man is, his previous level of sexuality, his independence, his sense of dignity, etc.

Look into counselling to help you yourself. And maybe joint counselling. Mind might offer something meanwhile. Contact them.

All the best sweetie. You have a mountain to climb. Remember others climed the same or similar mountain. So find strength in this. You're in my thoughts.

Blessings.

[RAYJAYC]

Hi LouBoo

I'm sorry to hear you're struggling - generally on this forum we're the 'sufferers' and get support from each other and I suppose, apart from readingthe inciteful posts from Paton, I've never thoroughly thought of it from family/carers/friends points of view.

I'm in exactly the same position as your husband with a few added medical problems which aren't important here so know how horrendous his pain is. I am however, single and live alone so don't have someone directly in the 'line of fire' so to speak. My mum is my main carer and without her I'd be screwed basically so make a point of not taking my many frustrations on her although it is extremely difficult not to!

I do know how she worries, struggles to watch me in pain everyday and when I have a flare, how she quietly panics! I can't help it and she knows that but I suppose while I'm in the throes of the most cruel pain, she's not on my mind. Not 'selfishly but purely because the pain and what it's doing to me acutely and everyday, is at the forefront of my mind.

I see a consultant in pain psychologist and a psychiatrist who're trying to help me manage my lifestyle now. Mindfulness is a term I hear all the time but I haven't mastered it yet! I'm still relatively new to chronic pain - six and a half years - so haven't grasped the technique, if there really is one, of managing this vile creature!

I've been on the four week INPUT course at St Thomas' - it was helpful in parts, not so much in others.

I've had a trial of an SCS but it was deemed not successful enough even though I thought it was! I'm currently on a waiting list to have a DRG stimulator trial at the John Radcliffe Hospital in Oxford.

What I'm trying to say is, although I can spout off about the pain and support others, unfortunately I can't really help you, which is sad.

Maybe you could start another thread entitled 'Calling all families/carers/friends of people with chronic pain - how do I cope??!!'

You might just get someone more helpful than me replying!!

I hope you find some solace soon....

RAYJAYC

[StaticNomad]

Hello Louboo, I have just registered on the site as I had my initial assessment for SCS at the John Radcliffe Hospital here in Oxford. Having been in discussion groups in Pain Management Clinics in Lancashire I can assure you that what you and your husband are enduring at the moment is sadly far from uncommon Louboo. I was specifically asked to attend the groups by the Pain Clinic Staff because I had an extremely happy and positive outlook and they wanted other patients to know that there can be light at the end of the tunnel. Have you or your husband heard of Fentanyl ? It is an extremely strong synthetic opiate which is often administered via a patch which lasts for 72hrs . I found it to be extremely effective in reducing the level of my pain just prior to my first spinal operation and I was not aware of any side-effects either. I also have found acupuncture to be effective when offered it in Lancashire and meditation has also been very useful for me too. On one level it is very relaxing and calming and on another deeper level, with practice, it is possible to concentrate on an alternative part of ones body that isn't in pain and that can reduce the level of pain. I find it particularly useful when I have chronic sciatica. I do have low days or mornings but they are usually the result of the culmination of a long period of insomnia, ie 6 or 7 days with just a few cat naps. I really hope the situation improves for both you and your husband and please feel free to ask me anything Louboo as regards how your husband is feeling and how I manage to keep smiling. Ben

[Loz2304]

Hi I'm sorry to hear the struggle you're all having my husband has ME and other issues with nerve pain and I can understand some of the struggles you mention, it's really hard to sit on the side lines and not be able to do anything to help make things right for them. These illnesses take so much away from people and there seems to be no justification or reason to it all and no way to make sense of it, my husband feels he has let down our young son by not being able to be a 'physical' dad to him and he's not given him the childhood he should have and no amount of reassurance from me is taking that guilt away from him totally which is hard on both of us. One thing that really did help was a course of I guess counselling sessions with a pain nurse that helped him talk about it without feeling judged or not wanting to let anyone down, I was involved at the end of every session as well which helped as well. Sometimes you can just feel a little bit invisible when attending health appointments for him. Maybe some sort of counselling may help that involves you both so you can feel more of a husband and wife again. He does work at the minute, some from home and his employer has been great for him which keeps his head up, is there anything he could do to give him a focus out of the house maybe even helping at a volunteer programme? It's a hard thing to deal with for everyone involved and dealing with the future that has been changed so much is the hardest thing of all. I hope you find the help you need for all of you with the pain programme and things improve soon xxxx

[Hidden]

hi , i am a below knee amputee that gets neuropathic pain . i found Gabbapentin useless same with carbamazapine and other meds, has your husband tried Pregabaline (Lyrica) , i have found this good , but don't like some of the side effects , dry eyes , memory problems (i have stopped reading due to this)

[LouBoo in reply to Hidden]

Hi yes he was on gabapentin but now on pregabiline and he finds that does help but he has similar symptoms as well and sometimes speaks words that come out all goboldy gook! But yr right if u look at all the side effects u won't take the drugs!

[Byfergie]

Don't give up husband come on the site let yourself have a voice and then take it from ther not looking at the bigger picture right now is important ,changing the now ,little things .

[StaticNomad]

Hello Louboo,I hope you and your husband are having a good day. I read on one of the replies here about volunteering or getting involved in a voluntary project

I think one the problems of chronic pain is that it can make one very inward looking and introspective. I think one of the reasons I can keep cheerful and positive is that I have worked previously in Aid and Development mainly with refugees and IDPs in places like Sudan and so despite the changes in my life and pain I am in with my spinal injury, I know there are others out there far worse off than myself. Volunteering might be a fantastic way for your husband to gain some self-esteem and self worth back. I am currently active on the publicity side for two overseas charities and I also am a fosterer for a local cat charity which involves having 2_or 3_cats staying with me whilst they are waiting to be re-homed which frees up space at the charity's cattery and helps the cat recover if it has come from an abusive background. Sorry to waffle but I'm not very sharp today having had one of those sleepless nights that your husband is probably all too familiar with. There is light at the end of the tunnel. Ben

[LouBoo]

Hi Ben,

Your comments are truly inspiring! He does do volunteering with the National Trust and this has really helped but it's only seasonal so when he's not doing anything this is where things can go downhill. He has tried looking for work but no one is willing to look past his disability which is incredibly frustrating when you have the Equality Act there to protect you.

[johnsmith]

It is time to look at the complimentary medicine alternatives. They cannot cure the problem, but some of the practices will help reduce some of the problems.

NICE has recommendations concerning chiropractic treatment. Look this up and then discuss the issues with your GP. You will need to see a McTimony chiropractor. I know from my own experience that McTimony chiropractors will work on muscles that are in spasm and have techniques to reduce the muscle spasms. Muscle spasm is an area that the NHS tends to know very little about. It is possible that as a result of your husband's operation that he was left with lots of small muscles that had gone into spasm. No amount of psychological chit chat can do anything about this. Psychology was suggested because of the medical consultant's failure in understanding the mechanisms of muscle spasm input on pain.

Another complementary practice is the Alexander Technique. This teaches the person on how to be aware of their functioning and how to develop better ways of using their muscle system as well as improve postural functioning. Kingston Pain clinic has an Alexander Teacher on their staff.

Lastly investigate Mindfulness and Meditation. This is a tool to better investigate yourself. The investigation will make you better aware of activities that help the body reduce pain and of activities that increase the pain. It will take time to learn the skill and time to learn enough about how you function to enable better control of what improves quality of life and what hinders quality of life. Long term health disability needs investigation by the person with it. The medical profession can only take snapshots at particular instances of time and cannot see what takes place 24/7.

Hope this has been helpful.