"I have been grounded"
 

I am feeling so scared and alone. Family can not see the pain I am in. I have severe degenerative disc disease. My MRI results are on my last post.if anyone is interested.
Was attending Physio for acupuncture. Was all he felt safe doing with me as I also have severely lax ligaments. Saw another Physio on Tuesday, she could not even complete initial work-up. ( gosh even typing this is killing me). Referred me back to My pain specialist.Saw him Wednesday.
Pain doc referring me for MTI with contrast. I start to black out after looking up, looking to the left or looking down for more than a few seconds. They think arteries are being pinched by vertebrae. This has been happening for past few months.
So sore, only on gabapentin which helps a lot usually. Lately pain is so bad I do not sleep more that 4 -5 hours even with sleeping pills.
I have been advised to not go in vehicle accept to Dr appt etc. I feel so alone. Family is trying to understand but are angry at my condition as it affects their lives so much. I feel like hiding away. Any advise people? So scared and alone.

Hi Lilygirl,

Sorry to hear you're having such a difficult time and in extreme pain. For you to feel your family isn't supporting you makes it harder. Is it possible your family is angry because they don't understand that such extreme pain can persist in someone who probably looks healthy?

I'm going to put a link here to an article that many have used to explain the effects of chronic illness to their families/friends.

http://www.butyoudontlooksick.com/ar...-spoon-theory/

It may not entirely relate to your current situation but probably close enough that if you show it to your most supportive family member it may help them get a better picture of your situation and open up a discussion on how they (and others) can help you by realizing and accepting that your situation is far worse for you than any effect it may be having on their own lives.

I know when you're really ill the people who's support you want most is those closest to you - but I also know that support often doesn't come unconditionally or in a limitless supply. That's where NT is so great. There is always someone here to understand, advise, support and cheer you on. So you're not alone.

Stay strong and hopefully you'll get some suitable treatment soon. Let us know how you're doing.

Thank you Bluesfan
 

Thank you for your reply. I will share this article with my family. The waiting for appointments is so difficult. I live in Canada and our health system is so slow. If you are not dying you wait. The doctor put me on oxycodon today to help me with pain. It helps a bit but I am not one for pills, I just want them to fix me! New discs perhaps, I do not want a fusion. I have read that Germany offers great new procedures for disc disease but I am afraid they will refuse to help me because I am so loose in my joints. Have you ever heard about anyone who has gone to Germany for that? Take care and thank you again for your help.

Hi Lilygirl,

Sorry I'm not familiar with the German procedure - I have heard that replacement discs made from stem cells of you own tissue are being researched but that even the trial stage is at least 5 years away - and I imagine the cost would be sky high.

I'm down in NZ so am very familiar with slow health systems - we have a public health system here. I don't have degenerative disc disease as such, but have osteoarthritis in back, neck, shoulders, hips, knees as well as an auto-immune condition and peripheral neuropathy. That's why I ended up on Neurotalk - trying to figure out how to manage it all.

Like you I'm a bit anti-pill - or at least not without thoroughly researching the possible side-effects - had too many bad reactions. Also I can't take many pain relief medications as they counteract the steroids I'm on to manage the auto-immune condition. The only thing I can take at present is paracetamol :rolleyes: but fortunately the steroids have a bit of analgesic effect - even at the low dose I take.

If it helps think of the oxycodone as a stop gap measure until you get treatment - it may take a while to feel the full benefit of it but also be aware that a tolerance can build up and you may find it isn't as effective after a while. You may want to discuss this with your doctor and formulate a plan for when this happens and be prepared to taper off.

If I come across any possible useful info I'll forward it to you. Take care.