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Chronic Pain Whatever the cause, support for managing long term or intractable pain. |
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08-31-2016, 12:31 PM | #11 | ||
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Magnate
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Pam,
Not sure what you mean by control the controllable things in hernia management? When I had my three (3);( one of which was an epigastric hernia) Ventral (abdominal) incisional hernias repaired this past November, it was done with mesh... (surgeon advised to help retain closure). So a little over a couple of months later; I am now dealing with Diastasis Recti (separation of the abdominal muscle from navel; side to side and up to breastbone and down to pelvic area). I am in constant abdominal turmoil, discomfort and pain. It is almost impossible not to do straining because of my opioid pain meds causing constipation for which I take three doses daily of Miralax to try to keep things a bit runny. Also, ventral hernia repairs are at risk for recurrence. When I told my surgeon, after the Diastasis Recti diagnosis, I was concerned about hernia recurrence; he said I have "a good reason to be concerned". It appears the mesh, which was done at the time of the Ventral surgery, has not made any difference and possibly caused more problems. The mesh can disintegrate, infection, etc., etc. I had read up about mesh prior to surgery. My surgeon felt using the mesh would give a better chance for closure than using sutures alone. That was also confirmed by many of the articles I read. Gerry |
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"Thanks for this!" says: | PamelaJune (09-02-2016), St George 2013 (09-03-2016) |
09-02-2016, 10:08 PM | #12 | |||
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Senior Member
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Gerry, controllables are
1. what you eat - no more processed foods including biscuits, breads, sugars & honey etc, cut out snacking, increase fibre in meals - I'm only allowed 12grams fibre a day so I'm closely watching & recording what I have so eventually I can slowly increase intake and avoid obstructions 2. how often you eat - Instead of larger portion 3 meals a day, I have 6 smaller portioned meals 3. increase water intake - I have a water plan that begins with 200ml cold water on rising, 400ml before each meal, 200ml with every movicol sachet followed immediately with 200ml cold water, 200ml after every cup of tea & reduced number of cups of tea throughout the day, 200ml cold water again before bed 4. reduce medicines that can contribute to blockages, hard to do as I've already minimised considerably so I've introduced the distraction method, at a time I would normally take meds I deliberately do something that takes me away from the medicine cabinet so I can stretch out the time between meds. It can be go for a walk, make a phone call, look something up on line, play a game, anything really that ultimately helps in the long run reduce the number of meds taken a day, even if it just 1 less it helps. 5. Increase exercise - I'm walking further every day and I've begun Pilates classes ps, I've lost 2.8kg & can already notice less pressure on my abdomen wall. We got told back in 2007 to avoid any further stomach surgery at all costs, I've had so many ops on my stomach over the years and the next stomach surgery likely to be fatal. Hence in 2013 when I was due to have spine surgery again they couldn't go through my stomach to do a cage & instead I had to have the metal rods fusion again.
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I can still remember what life was like before pain became my life long companion Last edited by PamelaJune; 09-02-2016 at 10:35 PM. Reason: Add comment |
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"Thanks for this!" says: | ger715 (09-03-2016), St George 2013 (09-03-2016) |
02-02-2017, 08:37 PM | #13 | |||
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Home from a very big round of nerve root sleeve injections. Went in Weds am and home late (very) that night. They wanted to keep me in but I insisted I come home. I had injected T3,4,5 & 6. L3,4 & 5 & S1. Yesterday passed in a haze, today I'm with it more, lower back seems to be responding. Upper back not so much, lots of pain on the left upper side still. Saw my Nevro specialist in theatre & agreed to meet with her within the fortnight. PM face blanched when I said I don't think the unit is working, I got the feeling he agreed with me. Will see him within the month. Now if I can get this depression under control I might feel half human.
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I can still remember what life was like before pain became my life long companion |
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"Thanks for this!" says: | ger715 (02-04-2017) |
02-07-2017, 09:53 PM | #14 | |||
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Struggling to get this severe upper muscle spasm under control, took 5mg Oxy at 4am, 1 temgesic & Valium at 7am and same again at 8am. Nothing is working. I've managed to get an appt to see my PM at 3.30 tomorrow. Hope he can help. Called in sick today including not working from home. its 11am, I'm clock watching until 12noon where I can take temgesic & Valium again. Beside myself with pain. Have even tried rolling against the wall with a tennis ball in between the shoulder blade (scapula) and spine tying to relieve the pain. I can't recall having a spasm like this since the time they put me in the mount hospital back in 2013 after I had the Nevro implant. I know my PM gave me an epidural last week along with the nerve root injections but maybe he was unable to inject the upper spine where needed because it's where the SCS leads are?? This combined with my spiralling depression & anxiety is tippping me over the edge. At 8.30am I thought the drugs were starting to work but they didn't last long at all, maybe 30 minutes. Think I will have to revert to 2 temegesic every 4 hrs along with 1 Valium every 6 hours until I see the PM tomorrow.
Edit Did everything I could to distract myself until 12noon & at 12.03 took just the 1 temgesic & Valium & in another 10 minutes will take the 2nd temgesic, so far its 20 minutes in and no relief. Pain score is about 8. Can't put myself anywhere to relieve it. Getting quite worried but at least it's taken my mind off of the depression....
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I can still remember what life was like before pain became my life long companion Last edited by PamelaJune; 02-07-2017 at 11:25 PM. |
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"Thanks for this!" says: | ger715 (02-08-2017) |
02-08-2017, 06:26 PM | #15 | |||
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Got everything ready for DB so when he got home he wouldn't disrupt me, (dinner & instructions) cats done, retired dogs done and also inreadiness for the 2 working dogs coming home with him. Send him an email to say I'm going to bed & all is done, he sends back, how will I know if the animals have been fed... duh because I've told you and you will see DD3 & DD4 food in their regular spots and DD1&2 will have their bowls in the same spot as always in readiness for tomorrow morning....
Went to bed at 6.30 just as he got home fully hoping to get in 12 hours sleep with the medication I've taken. I woke up at 10, in pain, came out and he says what's wrong with your leg? Nothing why? You are holding it - I'm bent over double with pain from my back and my hand happens to be resting on my knee. Sigh, I go back to bed, wake again at midnight with pain, back to sleep & again at 2, I'm lying there thinking this is just relentless but I can't take anymore drugs. I drop off and into a deep sleep. Guess what! Numnuts DB forgot to turn his 4am alarm off, I wake up, the dogs wake up and by 4.15 I know no chance of me going back to sleep so up I get to do the dogs - again! DB has the ability as you all know to sleep at will. I know he's tired and I don't mean to whinge about him, but gees how hard is it to turn off the alarm when you know you are not getting up. I'm saying this because it's a regular occurrence unless I remind him to turn it off. So because I was abed, no reminder. Life is just not being fair to me at present. We are in for big storms apparently with 80ml expected in very short period so I've been and cleaned / done the kennels and runs (nothing worse than wet Doo doos that pooches then race through if excited). Maybe I should have been the DDO. If my health / spine had been good I think I will have been a good one. DB is excellent don't get me wrong, he's very good, but something needs to change here at home, I can't go on like this.
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I can still remember what life was like before pain became my life long companion |
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"Thanks for this!" says: | ger715 (02-08-2017) |
02-08-2017, 08:45 PM | #16 | ||
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Magnate
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You have been on "overload" for quit some time. In addition to dealing with very possible side effects of the Sleeve Nerve Root Injections; the painful back spasms are causing you to double over. I'm sure the inability to get some badly needed sleep has you just about at your "wits end"....
I just don't get it; so many men just don't seem to be able to either show or have the compassion needed to console us. I think my husband just turns the compassion dial on "off" and does not seem to realize the level of pain that is going on before his eyes. He's really a good man too. Somehow, we just seem to see they are taken care of first. How was your appointment with your PM? Hopefully he was able to calm down some of the spasms. Gerry |
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"Thanks for this!" says: | PamelaJune (02-09-2017) |
02-09-2017, 08:45 PM | #17 | |||
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Saw PM yesterday - his receptionist is a god send, she sent me through to him straight away at 3pm rather than wait until 3.30, she said Nevro rep not here yet so she can wait a little and it's clear you need to see J now. He's sent me for X-rays & blood tests (may have an infection, unlikley but worthwhile checking) which I've just had first thing this morning at 8am at the hospital. He doesn't think the lead could have moved, but is also not ruling it out. I still believe it's a muscle spasm. The only way to describe it is imagine the worst possible foot or leg cramp you've ever had and then add a severe burning sensation to it.
He has changed my medication, insists I go off the anti-depressant and restart the 10mg Endep, take 2 sublingual temgesic every 4 hours and 2 x 20/10 Targin twice a day. Says if I can't get it under control I'm to present over the weekend to the private hospital Murdoch which also has an emergency department. (You pay $300 upfront and don't get it back, your health fund picks up the rest) he said not to go to the big public hospitals, they wouldn't understand my condition or chronic pain. Believe me, I would never go to them ever for my chronic pain. I've experienced their disdain previously. So I've had the bloods and X-ray, the X-ray technician remembered me being here from last week on Wednesday, she said a strange thing. Pam, if you continue bent over like this for the rest of today, I think you shouldn't wait until a Monday to see J for your blood test results, I think you should go to Murdoch now. Well, the blood people have my mobile and they know the results are requested urgently, so I'm sure if they find anything they will phone me and I'll take myself off then. In the meantime, having again been up since 3 and going to bed at 12, I'm off back home to bed & hopefully sleep. DB will be home it's his RDO. I think he will be supportive today. It's obvious to everyone I'm in agony, yesterday my PM J, his receptionist wondered aloud why he wasn't admitting me there n then.... Nevro rep then proceeded to need to make a number of calls to Victoria, Sydney, Atlanta... apparently one of the leads / electrodes has disappeared. She and the others she spoke to who could all see my data on their laptops had never experienced or seen anything like it before. She's turned the unit off completely and will see me on Monday at 1.30 with J to review my X-rays.
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I can still remember what life was like before pain became my life long companion |
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"Thanks for this!" says: | ger715 (02-09-2017) |
02-09-2017, 11:04 PM | #18 | ||
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Magnate
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Thanks so much for all the info. I will try to absorb this a bit at a time.
Not sure you remember a poster named Rrae or maybe you had not started yet. She was quite interesting. If I understood correctly, when you first had your SCS done and redone; there was only space for one lead because of excessive scar tissue. From my understanding; most have a few leads. I digress.... Rrae had at least one horse, if not more. It appeared fairly soon after her SCS was implanted she was baling hay and one of her leads either moved or broke. Her spasms were unreal; She even mentioned having rolled over on the floor from the pain (not sure she was at work at the time). I'm not sure that there was ever a connection with the spasms and lead issue; but what you are dealing with seems very similar. I think you mentioned after the bowel obstruction and treatment in the hospital may have caused a problem with the lead/SCS. I'm glad you are off the Zoloft...That is in the range of the Prozac and high end anti-depressants. There were articles indicating, in some individuals, the depression deepened and was quite concerning. The month I was on the Prozac was really quite worrisome. I hope DB will be more supportive. It does mean so much for our partners to understand and show love and support. I love my husband, he is a good man; but as you know, in addition to the PN (ankles/feet often on fire; he just don't seem to understand the pain/ nerves going haywire with one another. In the house; winter or summer; I have velcro sandal/slide with no backs and a heel about 1 to 1 1/4"; and no socks because the touch just adds to the nerves acting up/burning.) My belly/stomach/groin/hip are a painful mess; especially with 3-4 Miralax a day the belly/stomach/cramping, etc. plus the fact that I don't have a rectum so the colon is directly connected to some muscle/a....nal area. I am on the "potty" several times a day for 1/2 hr. or more each session. This afternoon hubby was in the Family Room, I went to sit for a while on my easy chair with my feet elevated on some floor pillows. I mentioned how badly my tummy felt and was feeling really quite tired......What he did was on "Q".....without a word, he got up and went into his office where his computer is and sat down starting using it. I kinda gave a bit of a "shout out" like....."did I scare you away"???? All he could say was "no" and continued using his computer. As I mentioned yesterday, while he is a good man; he, as well as many men, I think have a dial that is turned "off" to compassion. Sorry for the long "pitty pot"; but know you more than understand. Pam, you really had quite a workup. Hopefully, the results will enable you will get the treatment needed, including the possibility going to the ER at the private hospital. With all the pain issues, etc., caring for the animals/pond, house, etc. are a full time job; can't imagine where you find the strength to have a job too. Please do take care of yourself. Unless you do, you will be of no help to DB or anyone else. Appreciate your keeping me up to date. Gerry |
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"Thanks for this!" says: | PamelaJune (02-10-2017) |
02-10-2017, 05:35 PM | #19 | |||
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No change to the pain, I still believe it is a muscle spasm. The "burn" gets worse as the day progresses. This morning I awoke, I'm aware it is there (very aware) but on the lovely highly subjective inaccurate pain scorer scale of 1 - 10, currently it is sitting at a 6, I can do things, I can get involved in something and my mind can park the pain off in a corner of my brain until it says hello again.... so in all, a 6 is an improvement to the 8-9 I went to bed with last night.
It must still be Chinese New Year celebrations ? We seem to have fireworks go off each evening between 8pm & 8.30pm. I had to bring DDDog4 inside last night as he was freaking out & looked ready to jump the fence. DB said the night before he had to sit outside with him to soothe him. I'm like, dude it's an unusual summer here, it's 15c outside (unlike the what would normally be at that time of night 25-31c) and raining like never before, I'm not sitting outside in the wet, cold and hunched over in pain with your DDDog. (DB is in bed). Also, my tablets had kicked in (yay) and I was struggling to keep my eyes open, sitting outside I would have nodded off for sure. Anyhow, at 9pm I roused myself, realised the fireworks finished & put DDD4 outside. I can sense this may be an issue in the future, our other 3 DDDogs couldn't care less, DD4 is so tall and lanky he could leap that fence with zero effort. Fingers crossed today pain score remains at a 6 or below, I've taken the Targin 20/10 & 1 sublingual at 4am. If no improvement by 8am I will add to it the Valium. I'm so worried about a bowel obstruction, I have no stomach sounds so today will be a liquid only day for food consumption. Ensure for breakfast & lunch & tea will be apple & blackcurrent cordial with 250ml cold water.
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I can still remember what life was like before pain became my life long companion |
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"Thanks for this!" says: | ger715 (02-11-2017) |
02-11-2017, 01:33 AM | #20 | ||
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Magnate
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I'm glad it's down to a 6; as you mention, at least you can think without the constant zapping. I usually have a 6-7 is my norm; but what is norm for one may be different for someone else. But those brain zaps really do get in the way of even thinking or accomplishing much.
Are you taking any of your laxatives (can't remember what you call them which are similar to my Miralax).???? The meds so often get in the way of BM's. You probably are taking more meds than usual which, for you, might be a "red" alert. Hopefully you and the DDDogs sleep well tonight. Gerry |
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