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Trusted Contributor
Posts: 3,874
Registered: ‎03-09-2010

Re: How Do You Stand Watching a Loved One suffer?

I am so sorry to hear this, Mindy.

 

Just wondering......  Have you considered visiting one of the major national medical clinics like the Mayo Clinic?   They specialize in diagnosing and treating complex and unusual disorders and put a whole team of specialists on the job to work together in finding the best solutions.  Mayo has several locations in the country.

 

Prayers for you and your husband.  I hope he -- and you -- can find peace and relief.

Honored Contributor
Posts: 10,392
Registered: ‎05-23-2010

Re: How Do You Stand Watching a Loved One suffer?

[ Edited ]

Acupunture, biofeedback, and a grocery list of other unconventional treatments did not stop the pain. He is not dying from this disorder. Even the strongest pain medicines he had following surgery, while staying in hospital, did not stop this pain.  He even continued having the pain, when he was treated for pain,  in the ER for passing kidney stone.  Sorry, I spoke about this, but I needed to release the sympathy I have for him. It is so hard to watch this and be helpless. He is going to try something he tried before, but in a new way. He has a prescription for this, but we having trouble getting it.  I convinced him to try this, again, because there is research which shows this treatment helps some people.  It will be some time before he starts. Thank you all, again.

Respected Contributor
Posts: 2,810
Registered: ‎03-10-2010

Re: How Do You Stand Watching a Loved One suffer?

I am sorry to hear this, but why put it our here and refuse to say ,

what the conditions is? And to say in twenty years there has been no help. I feel so badly for you both

 

mm

 

 

"Cats are like potato chips, you can never have just one".
Trusted Contributor
Posts: 3,874
Registered: ‎03-09-2010

Re: How Do You Stand Watching a Loved One suffer?

[ Edited ]

I am thankful you are still willing to try new approaches.  I really pray you find something that gives him comfort.

 

I don't mean seem pushy........but it's hard to believe that something can't help your husband's pain!  I'm a medical assistant and have worked with a surgeon who worked with cancer patients, etc.  I can't remember anyone who couldn't find some way to manage pain to at least some extent.  I fervently  hope your husband can soon count himself among the success stories!

 

Some pain specialists are anesthesiologists or have anesthesiologists on staff.  They're specialists in pain control and can usually find a way, even if it involves combined drugs or surgeries or other procedures to deaden or inactivate nerves.  Please don't give up!  There must be a "right" approach out there!

Trusted Contributor
Posts: 1,211
Registered: ‎03-10-2010

Re: How Do You Stand Watching a Loved One suffer?

OK so I'm gonna go out on a limb here and maybe have my post disappear...but have you considered medical marijuana?..Not the kind you smoke but you can get oils and extracts that have been proven to work wonders on pain..you can take them orally or topically...I don't know if its legal in your state..its worth considering..there have been many studies on this...DW

Honored Contributor
Posts: 10,392
Registered: ‎05-23-2010

Re: How Do You Stand Watching a Loved One suffer?

[ Edited ]

Dancing woman,there is relief of some pressure that accompanies the pain with mm. Hard to find the right combination of cannabinoids, but there was one day, while visiting a legal state, just one day, he was pain free.  The latest treatment to show some hope was tested at UCSF. They now need to do another study; double blind. They are not recruiting, yet. I have been checking everyday.  We have been following the work of the chief specialist there. He is a renowned expert in this disorder.  For the lady that mentioned cancer pain, yes cancer pain responds to opiates, but this disorder only marginally responds to specific opiates; cancer patients, while in terrible pain, get more relief from their pain, with them.  The disorder will not respond to nerve pain medicine, either.  We will try high flow oxygen.  Oxygen did not help, years ago, but this time it will be administered differently.  Just wish him some time without pain.

Honored Contributor
Posts: 8,951
Registered: ‎03-10-2010

Re: How Do You Stand Watching a Loved One suffer?

[ Edited ]

If one has done an EXTENSIVE investigation and knows both risks and benefits, I can see NO reason why one would reject a possible trial of the derivitives of Marijuana. 

 

I had a horrible flare last week, and if I had access to legally available pot, I would have tried it then.

 

Mindy, you are a dear good soul to keep your vigil. Has this person tried EVERY alternative as far as pain relief is concerned?

 

I sorely hope that neither you nor he feel the slightest reluctance because of the idiotic, groundless comments in the popular press about MM.

 

I will be praying and sending most sincere hope that any treatment that helps in any way will be available and that you and he can take advantage of it.

Super Contributor
Posts: 362
Registered: ‎06-06-2015

Re: How Do You Stand Watching a Loved One suffer?

[ Edited ]

@Mindy D wrote:

I feel so bad watching my love one suffer in excruciating pain. It has been twenty years of nonstop pain. My poor loved one is finally at the end of his rope in his ability to stand it. I feel so bad inside, but I still have hope for a cure. He is starting to lose hope and writhes in pain, crying and trying to get through it. If I had three wishes, I know what my first one would be.


@Mindy D

Just a thought, is there something he always wanted to do, like travel, visit other relatives, friends?

A long lost friend you could find for him, skype, facetime?

Visit museum's, going to a park, favorite restaurant, taking a drive to enjoy the scenery?

Books on tape, a movie night?

I know when I traveled and went to visit family or friends it took my mind off the pain for that moment.

You said he has meds on board, so just do something even if its just for a little while, to occupy his mind and keep him busy.

I will say prayers for you both.

I hope you two can enjoy sometime together doing something he would enjoy,  Have some adventures together, make some memories...

Honored Contributor
Posts: 34,617
Registered: ‎08-23-2010

Re: How Do You Stand Watching a Loved One suffer?

Mindy, when was the last time he had a Pain Management consultation?  

 

It sounds like it's WAY past time for another one!

Honored Contributor
Posts: 14,880
Registered: ‎03-09-2010

Re: How Do You Stand Watching a Loved One suffer?

My mom who is 89 recently stopped using all her meds and started medical M...she feels better than she has in years and all of her confusion seems to be gone.I think this treatment has a lot of possibilities yet to be discovered.I hope your DH finds something to help soon...twenty years of suffering is unthinkable.I hope that you will continue to have the strength to get through this and I think that you are a very special person.