Don't really know where to turn or how to cope...

  • bek374
  • Topic Author
  • Offline
  • Fresh Boarder
  • Fresh Boarder
More
4 years 7 months ago #22160 by bek374
So I have just discovered this forum and honestly I have not other options so maybe I can get some help here.

I am 36 years old and since 1994 I have been dealing with back pain after having a chair pulled out from under me in High School. I have had an artificial disc in my spine since 2003 when I became unable to walk, sit, stand or anything. Since that surgery I have still had back pain although to a lesser degree but also had ongoing problems with my SI Joint. I have had 5-6 cortisone injections in the SI joint.

Over the past 2-3 years my physio has been treating my SI Joint pain as it has become unstable. It became so unstable and chronic in the pain that I returned to me back specialist.

Last Tuesday I saw him only to be told that there was nothing that could be done for my back and SI Joint and the sooner I resign myself to being in pain the better. I left with no options for pain manangement, no treatment options...nothing. I was and am shattered.

I cannot take NSAIDs due to having been on them for so long that I ended up with a suspected stomach ulcer. Pain medication doesn't relieve the pain and I don't have the option of stronger medication which would be something like endone.

I have been taking Lyrica and wanted to discuss neuropathic pain with my specialist but I was so upset that I forgot to. The lyrica isn't relieving all the pain anyway although I am only taking 25mg at night as when I took it morning and night I experienced tremors.

I have lived with constant pain for 21 years. I have noone to help me at home. I fear that soon I won't be able to work and won't be able to pay my mortgage.

I am barely making ends meet financially so can't even afford to go to the local pool to try and walk in the pool. I cannot exercise due to it aggravating the injury.

I am staring down a long dark tunnel of pain for the rest of my life and really don't know if I can keep moving through it.

Please Log in or Create an account to join the conversation.

More
4 years 7 months ago #22161 by Mrs S
Hello Bek374,
welcome to the forum. I'm sorry to hear that your specialist has not been able to provide you with any options to help deal with the ongoing pain

you are suffering. Pain management is an important part of being able to help us cope with the chronic pain and its effects on our daily mobility .

As sufferers of chronic pain we are our best advocate so perhaps make an appointmemt with your GP and and ask for a referral to a pain management course, and a referral to another specialist for a second opinion? Your physio may have some exercises that you could do if he/she has already given them to you to help strengthen your core which is very important when dealing with back pain.

It sounds like you are doing it tough at the moment, there is a lot of support here, so please keep talking to us.
Just having somewhere to unload is helpful as stress increases our pain and reduces our capacity to cope. We have a Venting thread where we can let some of that go and it helps relieves the stressful burden that chronic pain brings.

Take care and please keep popping in and let us know how you are going, there is a lot of information here to read on the forum.

Please Log in or Create an account to join the conversation.

More
4 years 7 months ago #22166 by Dressagegal45
Replied by Dressagegal45 on topic Don't really know where to turn or how to cope...
Hi Bek374,
Welcome to the forum. I'm new also and have very similar issues to you. I'm sorry you had such a bad experience at the specialist. I too have had bad experiences with a couple. They are so up themselves and I think they sometimes can't see outside their specialty and care even less about things that don't involve whatever it is they specialise in. I'm going to a pain clinic at the end of April which many people on this forum have advised. It would be good to go to your GP to ask about one in your area. I think once you get a team of people around you, you will feel better.
I also have SI joint dysfunction. Did you get relief from the cortisone injections? I've heard they can be good and bad. I also have quite bad sciatica from the SI joint.
Be kind to yourself.
DG

Please Log in or Create an account to join the conversation.

  • christopher morgan
  • christopher morgan's Avatar
  • Offline
  • Fresh Boarder
  • Fresh Boarder
More
4 years 6 months ago #22360 by christopher morgan
Replied by christopher morgan on topic Don't really know where to turn or how to cope...
Hi bek,so sorry to hear of the pain you are experiencing from what seems like a preventable injury some years ago. I also had a preventable injury from a negligent osteopath who seriously damaged my neck and now I too share your frustration with going through all the various avenues only to end up with increasing amounts of medication in my case fentanyl patch. And I can no longer work.The si joint is a tricky one to easily treat. The only suggestion I can make is to find a good tai chi teacher near by. The slow movements take some time to master but they build up good stability in the legs and trunk connection of our body. There is no doubt at all that it also has a wonderful effect on the mind as it becomes a form of meditation as an old Chinese teacher I went to years ago for a while said 'Your mind and body become one'. I felt like grasshopper from the old tv kung fu show. And I remember having better blood flow and energy moving through my body after a while. It is gentle but may help you gain lower body strength to support the bone structures involved in your pain.
Yoga although sometimes more demanding may also be worth looking into if that suits you. Again to regain a balanced strength in your body in all sections, which if working well, may help compensate for the sections in difficulty. I know how daunting it can be to even exercise with pain I now spend nearly all day laying down myself at this stage but I always kept doing simple walking exercise to try to support my head and neck pain by keeping my lower body as fit as I could right up until last week.The good thing about learning tai chi or yoga is it costs you nothing to do at home once you know the movements.
Swimming of course would be another low impact exercise aiming again at exercise to strengthen muscles without strain. And many people say pilates can again aid with core strength which then may help to stabilise your si joint. All these things take time to build up the benefits but if you can enjoy doing one of them then you would gain the added benefit of doing something that you can look forward to each time and probably meet some nice people.
The other practical things that help me are for sleep taking 2 magnesium tablets before going to bed which can help you doze off and magnesium is important for muscle function. And I found Readisorb b12 spray was helpful for depression as I hate anti-depressants and it also supports the nervous system. But it must be this type of b12 called methycobalamine .The readisorb brand tastes quite ok as well some are a little rough to take.
In the second year following my injury before it escalated I did get some good temporary relief from acupuncture here in Melbourne from a chinese doctor and some temporary relief from a good remedial massage therapist. And mentally as I have watched my life crumble around me the main source of support is that I am a follower of jesus and as a Christian I turn towards the teachings and beliefs I have to help me through the darkest times but I realise not as many people are interested these days. But if you like I will place you on my prayer list for wounded friends who I pray for each night. It is a bit like modern psychology in a way for people who have no knowledge about his teachings. You mainly try to think about forgiveness, compassion, love etc. and of course we believe there is life after our journey here.
Anyway I wish I had more I could offer you but keep looking forward and remember your not alone. please keep in contact with the people here who understand better than most about what you are going through. If I come across anything that may be of interest to you I will ost it,all the best christopher.

Keep looking forward , the sun is still shining behind the clouds.

Please Log in or Create an account to join the conversation.

More
4 years 6 months ago - 4 years 6 months ago #22378 by Marley
Hi Beck

Firstly, I wonder if a GP Access Plan to a psychologist or a counsellor at a local health centre could help for you to just talk it out. It won't fix things, but you may get another perspective.

Being in constant pain can be the focus of your existence. I understand not being able to afford the air you breathe, but for now, you have some positives, you are still working, and you are still paying your mortage. It probably feels so overwhellming, and I could have some not nice words to describe doctor who isn't in your position.

I do not believe in false hope, but I have to believe there is always hope somewhere, sometimes it can't be found. Having just wasted time and money on a seminar, all I could think about is @#$@#$@ you are not in my position! It is easy to preach hope, but hope is such a fleeting thing, it can be gone before you recognise it. No doubt you have heard people talk about "baby steps." Something I am impatient of, but there is a point in "baby steps," if you think iof them as tiny steps on a ladder towards somewhere, they get to somewhere, you may not know where, but the shomewhere has 'hope on each step and once on that step, it is an achievement and a place to rest a while. Here you can create your own visualisation, your own dreams, your own hopes. When you are ready, take another step.

I hear your pain comes from more than your S1, but from the anger of disheartenment in the hoplessness given to you by the doctor. This is also very real pain. There is heaps in this forum, even if you just open it an read stuff that is irrelevant, you might just find something in a post that finds your glimmer that is currently being smothered by your pain.

You have come so far, you are still working. You are still paying the mortgage. These are achievements you are struggling to hold on to because you were given hopelessness by your doctor for you hold this iinstead.
..
There may be options to your pain. Lyrica may not be the medication for you, and I fully understand your reluctance for Endone. There are many other medications available. I don't know if you are stuck by finances to that pain specialist, but if attached to a pain clinic you may be able to see a collegue who may be more compassionate.

Living with chronic pain sucks. But this forum says it is possible. I don't discount the struggles, nor your experience, but you do have options, Right at this moment, finding them might be all too hard, so make use of the professionals available and make a long appointment with your general practitioner for an Access Plan and let the professionals present you with affordable and realistic options.

Marley

Once I could laugh with everyone
Once I could see the good to me
Holding the world inside
Now the world is grey to me
Nobody can see you gotta believe it
Oh oh the night comes down
And I get afraid of losing my way
Oh oh the night comes down
And it’s dark again
“The Night Comes Down” Queen
Last edit: 4 years 6 months ago by Marley. Reason: typo for correcting intent

Please Log in or Create an account to join the conversation.

  • bek374
  • Topic Author
  • Offline
  • Fresh Boarder
  • Fresh Boarder
More
4 years 6 months ago #22402 by bek374
Hi Christopher,

Thanks for your reply. I too am a Christian and my faith is a comfort although I must confess to feeling 'forgotten' by God in my pain. I keep hanging in there though. I appreciate you adding me to your prayer list and that you would take the time to do so. Any and all prayers can only help.

I have had an update on things and found the courage to go back to my GP and seek out another specialist. He looked at the same scans as my previous specialist and is not sure that the SI joint is the problem. And so I am having 2 different injections in the next month or so to see if there is something more that is causing my pain and if it is something treatable or at least manageable.

Hopefully following those injections I get some answers and even maybe some direction for what kind of exercise I am allowed to do.

Thank you for your suggestions though. I will hang on to those and discuss them with my Dr and Physio.

Beck

Please Log in or Create an account to join the conversation.

Moderators: Johnnojo.m
Time to create page: 0.085 seconds