[Bevulz]

Hi,
Please could anyone help? My partner has always been fit and strong, he is 39 yrs old. For the last 19months he has been suffering and today is at suicide point.
The pain first started in his right hip (he discribes it as an electrical pain?) the pain then moved into his back, first time this happened he was hospitalised and on high painkillers, while in hospital the nurses were an hour late with the meds this resulted in extreme pain in lower back pouring with sweat and screaming out since this we know when the pain starts get the meds down quick to stop it getting to this level. he is currently taking gabapentin but when pain kicks in 4 tramadol 10 ml morphene, 2 diazipam, 2 painkillers. he takes slightly more and drops in and out of sleep and this helps him through. These attacks could happen anytime usualy when he has walked,his distance of walking is becoming less and less as time goes on. when he has walked too far he ends up in bed. If he over uses his back same thing.
Other symptoms that go with this are severe headaches lasting 2-3 days, no painkiller will shift this and he does not sleep for the first day, day 2 & 3 he dozes in and out of sleep.
As well as not being mobile he has different random feelings, e.g as if his legs are in 2 plaster casts heavy, one leg is in a hot bucket of tar, both feet are in ice cold buckets of water, toes are broken, bubble like feelings in the bones of the heels, both legs have wellies on full of water causing suction, when lied in bed one leg is as fat as the bed and one is slim, feeling as if one foot is facing outward when in fact it is facing inward, someone is slicing his thigh, someone is cutting his toe off, throbbing big toe, slicing his calfs, Numbness around right ear and down right side of face as if someone has wiped a jellyfish across, pain in back of eye, pain under left buttock (in a square patch), as if hips need clicking into place, the list goes on!
new symptoms are if he reaches out to grab something he gets an electric shock. Today he could not open his hand out from a curled position he had to use his other hand to sprize it open.

He is currently on a waiting list to fuse a nerve at the top of the heart as he has recently experienced rapid heart tate (SVT) Im not sure if this is linked with other nerve symptoms doctor says not, but it is a coincidence all this is happening at the same time.

He has seen an Orthopedic doctor and seen 3 different neuro surgeons (4 appts). When the first Orthopedic Doctor looked at the MRI scans he mentioned a lump on the nerve around the hip but said he would have had to have taken a masive impact to recieve any bruising to the nerve. I have asked about this lump again later but other neuro surgeons say there was no lump?? The 3rd neuro surgeon ordered a brain scan as she suspected MS but nothing was found also nothing found on 2 MRI scans of the spine. We are now waiting to see a neurologist 19 months later.

Recently, on fri 12th oct i had to ring an ambulance because he couldnt breathe in with back pain. The doc on the minor injury ward explained to me that his back spasms had pushed his diaphram causing pressure on his lungs and restricted his breathing?? He seemed quite relaxed about this as if it was an everyday occurance!! I am scared this will happen again.

Please post if you think you may know what this is, at least then i can mention to the Neurologist rather than missing something vital. I am not frightend by what i might hear it is more frightening not having a clue what it might be.
(Please excuse the spelling)

Thankyou in advance
Bev

[mrsD]

Welcome to NeuroTalk:

I can't address the source of your husband's pain. But I am concerned about his medications.

It appears that he is receiving very high doses, and this alone
can cause respiratory depression.

I would discuss this with his doctor.

[Bevulz]

Originally Posted by mrsD

Welcome to NeuroTalk:

I can't address the source of your husband's pain. But I am concerned about his medications.

It appears that he is receiving very high doses, and this alone
can cause respiratory depression.

I would discuss this with his doctor.

I too am concerned about his meds but this is the only way to get through his pain, to be honest, once he is in that pain zone he dosent care if he dosent wake up. it is horrible to watch him go through this pain and then take away the tablets that get him through. I have tried to take them but he seriously needs them.The doctors just ignore him he had a slanging match with the doctor because he wouldnt give him diazipam the doctor was saying he diddnt need it and it is addictive, my partner nearly bit his head off, he got them in the end. Thankyou for your replly x

[(Broken Wings)]

Hey, Bev,

It certainly is a lot to deal with.

The unknown is the scariest part.

I encourage you to keep a dairy of his medications, symptoms, pain scale, even if it's over ten, list it that way, sleep pattern, meals, ADLs, telephone numbers for future reference, date and time, person you're talking to, discussions, appointments. Many things to keep in one place.

It has been a while for him to suffer in this much pain. Sometimes it takes many years to get on the right track.

I'm so sorry he hasn't had much relief, other than pain meds. Be careful. Just because he's desperate right now, don't grab at anything.

My pain management doctor referred to all my head-to-toe complaints as an onion, and things would have to be peeled off in layers, one by one. He was right. It took 7 1/2 years of hell before I could say I was going to make it ! ! !

I don't even like to go back in my mind and think about those years. I had no control. I seen several good doctors. A couple doctors that I would like to go back and slap.

As far as the meds go today, he has to do what he has to, to get by, but it is a heavy regimen and will have consequences, at some point, that he will have to deal with. There's always a trade.

I don't make light of his painful state. He is seriously miserable. It isn't likely he'll be better in a short period of time.

If he's had MRIs and CTs, labs and the like, at least know and be glad it's not cancers or other bad medical conditions you're dealing with, and he don't have. Use that as a positive starting point.

There's lots of forums here to visit.

Lots of caring people to share their experiences.

I know you can find things here to help you and him.

There is a "SEARCH" feature above, if you can use that, it might be helpful.

Keep asking questions. I gathered morsels along the way.

You're a good, supportive wife. I know it's hard on you, but he needs you.

Keep in touch and let us know what your hardest problems are in caring for him. We'll try to give you our advice. Lots of workarounds here.

Don't worry about typos. We can get it. If we need you to clarify, we'll ask. It's okay.

Take care of yourself, too...

We're here for you and him . . .

[ginnie]

Welcome to Neuro Talk. The symptoms your husband has, sound really severe. If you can get to a top dianostic center, rather from Neruologist to Neurologist, might be a good direction to go in. If you are in the USA, Mayo clinic is noted for their diagnostic ability. If outside the USA, perhaps post where you are and see if someone can respond to your needs. So sorry this happened. I will keep you and your husband in my prayers. ginnie