It's 1am

[crazymama30]

and I sit here awake. husband's pain has been horrendous, he went to see the pain doctor on Friday and got a fentanyl injection and multiple injections in the left hip. Pain was so bad he could barely walk.

It has not gotten any better. Now it is the right hip. I don't know what we are going to do. He cannot go on like this for much longer, no one could. It is horrible. Pain doctor ultrasounded the left hip and saw an abnormality, something really strange (I was not there so I have no idea what).

He slept from 8 or 9pm to midnight, got up and is now sitting on the couch asleep, but with a look of pain on his face even while he sleeps. I don't want to go back into the bed, if he gets up and tries to get off the couch by himself he will fall. He can barely hold himself up the pain is so bad. He has an appointment with primary doctor tommorrow to go over bloodwork, and while it will be very hard to get him there, I think he needs to go just to get his condition documented.

I don't know what to do. I need to work, have to work, but hate to leave. I will come home to take him to the doctor, but at the rate I am going I don't know how much good I will be at work. I hope I can get some sleep at some point. I will call pain doctor as soon as the office opens tommorrow, but I really don't know what they are going to do. At this point he needs to be hospitalized to get his pain under control, but that will be no fun either. None of this is fun, and I am not sure how much more of this either of us can take. It just seems to never stop.

My biggest fear is that if they cannot do something, he will take his own life. He cannot live in this amount of pain, in this agony. I am so scared yet numb at the same time, numb from all the **** that has come before, and will continue to come, and from seeing him in agony all the time. I hate the pain, it changes him. I understand why, but it does not make it any easier to deal with. He gets so irritable, anxious and paranoid. Then I start to worry that the pain is going to trigger the BiPolar (BP).

I am rambling, and might try to get some sleep myself now. thanks for all who listen, and please send thoughts our way.

 

[busywend]

I am so sorry for DHs pain and that you can not even sleep due to the worry. I hope the doctor will get something that helps him soon.

 

[Mattsmom277]

I'm so sorry he is suffering so badly, and that the ripple affect is causing such turmoil with your sleep, job etc. I can understand how hard it must be to watch him in so much pain, yet also have to tolerate his moods. I do hope it doesn't trigger BiPolar (BP) stuff. For both of your sakes.
Is he on only kind of at home pain treatments? I think perhaps I've missed some details in other posts you may have made. Shots can be helpful at acute moments, however if pain is so constant, is he getting proper medications to try to manage some of it?
I have no family doctor and the wait list here is years and years long for a new one. It's been about 18 months now. And pain docs refuse patients if they have no family doctor to do follow ups and maintenance and monitoring. So I have no pain control for my MS, and no medications for symptoms let alone medication treatments to try to slow progression of the disease. It does something to someone psychologically that is very ugly, to have pain every single day that even sleep won't offer a reprieve from. It is all encompassing and pervasive to every aspect of living. I have to work hard some days to ensure my pain and low threshold for noise, annoyances, etc doesn't affect how I interact with others, especially my family. For some that is especially difficult, I can't imagine also dealing with the impact of BiPolar (BP) on top of it all. I have compassion HUGELY for both your husband and you.
I will keep your husband and you in my thoughts and prayers, that he finds some relief. I see it says in your sig that he has deg. joint disease. Perhaps whatever is on his latest ultrasound will shed some light on the situation and offer potential treatments that might offer more relief??? Would the doctor or at his receptionist be allowed to share with you what was seen, since you weren't present, with your husband's permission to discuss it with you??

 

[crazymama30]

MM, yep, they can share with me as the husband signed a release to allow the doctor to speak to me. He is on oral pain medications at home, celebrex for arthritis, oxycontin and oxycodone for breakthrough pain, robaxin, and volaren gel not to mention the other medications he takes. Here the pain doctor does all the follow up and maintence/monitoring stuff. The pain medications are not helping this flare or whatever it is, they are not really even touching it. I have never seen him this bad before.

Thank you for your thoughts and prayers.....I finally was able to go back to sleep for a few hours.

 

[HaoZi]

Are you having weather there that could be adding to his pain? I know cold weather here really flares up my old bone injuries and those are nowhere near as severe as what your husband is dealing with. Heating pad/warm baths help mine some. I hope you both find some relief.

 

[Hound dog]

That has to be a living nitemare for husband and you as well. I hope the pain doctor can find a viable solution for the pain......no one can live like that for extended periods of time......no one should have to either. Have they looked into doing a nerve block of some sort? Maybe that would be an option that would help?

Many many warm ((((hugs))))

 

[crazymama30]

he has had many nerve ablations (where they go in and kill the nerve) and they help for a short time. As for the heat? He is sleeping on heating pads, sitting on heating pads. The weather certainly does not help, but he has never flared this bad period, let alone due to weather. I am not sure what is going on, and no one else is either. Thanks for the thoughts and ideas, all are welcome.

 

[DaisyFace]

O I am so sorry for your husband! That must be horrible!

Sending prayers...

 

[KTMom91]

I'm so sorry, CM. Hugs and prayers that you're able to get some answers and relief for your husband soon.

 

[hearts and roses]

I have no further ideas, but am sending thoughts and prayers your way. I'm so sorry for H's pain and the stress it's causing you. Hugs~

 

[Marcie Mac]

I so know the feeling - SO's bones are disinigrating due to the high amount of steriod use and if something breaks its pain on end. What helped him, and medi cal won't allow him to get an RX cause he doesn't have cancer (but his doctor is still pushing), is the fentanyl sucker. One night his left hip just broke, and he was absolutely screaming in pain. Docs at the ER would not even consider a hip replacement at that time due to his lungs failing, and we made the decision I would go home and leave him there. doctor told him he only had a 10% chance of surviving, and he begged to give them those odds, and one kind and compassionate doctor did. Unfortunately it was not the first and probably the last time I had to walk out to force them to "do" something - two hips and a sholder later, its his back and knees that are starting to go. But I found that after enough ER visits, someone somewhere comes up with a bright idea to try.

We have had the talk about "what if" pain medications stop working - believe me, spoken or unspoken, it isn't any easier to swallow that kind of conversation with someone you dearly love. There is no alone time if he is in excruting pain - I call the ambulance if I cannot be here. Better he be in the hospital where they can "see" it and will manage it

Am so sorry- I know this is so dang hard to deal with and still have a functioning life

Marcie

 

[DammitJanet]

I am so sorry also. Like you know, I can so understand. I am praying that by now you have some good information and relief is in sight. I think the weather change is kicking things up for many of us.

 

[Shari]

I am so sorry. Sending prayers for you.

 

[TerryJ2]

Wow, CrazyMama and MarcieMac, I am so sorry. You really need a better diagnosis, CrazyMama. Have you gone to a neurologist or any other specialist? I apologize for missing older notes. I haven't been here much lately.
Many hugs, and I hope you get some sleep. I feel so badly for your husband.

 

[crazymama30]

He has been to a neurologist, cardiologist, pulmonologist and years ago a rheumatologist and is going to a rheumatologist at the end of the month. All the blood work was fine. I am so done, just seems pointless

 

[Wiped Out]

So sorry, adding in prayers for you and your husband.

 

[susiestar]

I am so very sorry. I know something of the pain your husband is in. It truly does change who you are and so few people, even family, have any understanding of how truly awful it is. While I love to target shoot, I completely refuse to allow a gun of any type in my home because I am afraid that I would do something to myself when the pain gets bad. I have had to talk myself out of bad things quite a few times. I just picture my children and husband and somehow have always managed to not do anything so far.

If there is an abnormality or growth it may be something that surgery can fix. If it is specialized be SURE the doctor who does whatever surgery or treatment is well qualified. We have a friend who had a terrible, enormous tumor on her spine a few years ago. the docs here who wanted to do it had only seen it done twice and done it once each - and those patients either didn't survive or were paralyzed after the surgery. The woman's daughter was my high school bff and she found a clinic in another state that had the best docs in the country for this and they had done over a hundred successful, no paralysis operations like hers. So going to the right place and the right docs is extremely important.

Your husband may also need something for nerve pain. Neurontin is good and lyrica is better. The only thing is after you have been on them a few years you start to think they are not helping - until you go off of them for a little bit. You forget what they are doing, which is kind of nice. Many pain patients have some element of nerve pain with everything else, so it is good to try if you can tolerate the medications.

I guess the "good" news I can offer is that there are several much stronger medications your husband can take. oxycontin and oxycodone are on the milder end of the opiate pain spectrum. He can try morphine, methadone, fentanyl, demerol, even dilaudid. If the medications are just too hard for his GI tract to handle, they have implantable pumps that deliver the medications right into your spine. Sounds icky, but it takes MUCH less medication to get relief when delivered that way. It is a minor operation to have the pump implanted, and then a shot every month or so to have it refilled.

He can also go to muscle relaxers. Robaxin is also very mild. Soma (carisoprodol) is more effective, and they can also try baclofen and zanaflex. Benzos like xanax and valium are also used as muscle relaxers. Do NOT let them give him daily valium. Use a different benzo. After about 2-4 weeks valium induces a very strong depression and it is NOT something that a person with chronic pain should use because we have enough depression. IF we don't fight depression we are clearly nuts, in my opinion, because you would have to be nuts if this agony didn't get you down.

Even if he has been through all the muscle relaxers before they can rotate them again as sometimes when you are off of them for a few months or years they will work again if they are tried again. At least for a while.

The suckers that were mentioned are called supposed to be amazing. If your husband can tolerate NSAIDS he might get relief from either toradol shots or a short course of toradol tablets. you have to be super careful with the tablets because they are very hard on the gi tract and cover pain so well that some patients got bleeding ulcers and didn't know it until bad things happened. It is why so few docs will rx toradol tablets for home use.

Your pain doctor has quite a few options available to help your husband. Just make sure that you work with husband so that if you take him to the ER he doesn't put on a stoic, brave face. If he is crying or moaning with pain he will get a LOT more help than if he is quiet and lets them do their job while trusting them to help. They will think he is either drug seeking or not in that much pain unless he SHOWS them the pain. It is a mistake I have made several times and when I finally showed the pain to the ER staff on a different trip it was incredible how much more helpful they were.

I am so sorry. I know this tears you apart. When you see his docs be SURE to have his vitamin levels checked. Vit D deficiency can cause horrendous amounts of pain, as can low amounts of some other nutrients. If his levels are low it could help them figure out what is causing the problems.

Many hugs.

 

[DammitJanet]

Like Susie I am so upset you didnt get any answers today. I saw a pamphlet in my doctors office the last time I was there about a nerve implant thingy that is run off batteries. You said he had had the nerve ablations that worked for a while. This would be more like a long term thing where it is implanted in his spine and it sends a small amount of electricity to the nerves via the implant that has these batteries attached. Two small prongs are left out of the body and you just plug this thing in. Its really quite interesting. My son Billy met a woman at Radio Shack who had one and she said it worked wonders for her. She was in buying a new rechargeable battery pack...lol. They say it works very well for folks with nerve pain but not so much for just joint pain. So if he has both nerve pain and joint pain, that could at least help the nerve pain while you work on something to help the joint pain.

I am assuming he has tried the fentanyl patches? The first time I tried them they were a godsend. Second time, they made me sick as a dog. The methadone is helping me more this time except for my knees. Nothing is helping that. Im ready to just cut them off right now.

I agree with the whole thing about how suicide does seem like a viable solution at times. I have often said that it isnt going to be the bipolar or depression that is going to cause me to end it all, it is going to be when I just cant stand the pain anymore. That isnt an idle threat either. I dont worry about guns. I have plenty of them around. I also have a whole supply of medication set aside to do the job when the time is right. Its my solution that keeps me going so that I know that I can always manage every day because it is my choice to keep on keeping on.

 

[flutterby]

Try to get the toradol injection, followed by the pill regimen. It's 5 days of pills, 4 times a day and you're supposed to start with the injection. When steroids and pain medications wouldn't help me, often the toradol would.

 

[Jena]

i just wanted to say how sorry i am for you. i wish i had some ideas. umm have you ever tried any herbal remedies at all? i'm sure you have just thought of it as i was typing

(((Hugs)))