Excruciating constant pain

[Starwriter]

I'm a 67-years-old widow. Two and a half years ago I had bilateral knee replacement surgery. Following surgery I had drop foot in my left foot, which eased up to only affecting the large toe. During surgery a nerve in my left leg was nicked, resulting in numbness and partial paralysis. Also, a few months after surgery I developed lymphedema from my feet up to my waist on both sides. My latest MRI shows Scoliosis, Spinal stenosis, and several herniated lumbar discs, one of which is pressing on my sciatic nerve and causing me constant, unbearable pain on the left side, from buttocks to foot. I only sleep two hours per night--if that. I am on Norco 5-325 three times a day and that is not nearly enough but with the new laws going into effect that is all I am allowed. I have had several lumbar injections at Pain Management but was referred to a spinal surgeon who said I am not a good candidate for surgery. It would be at least 4 to 5 hours, with 3 months recovery time and no guarantee it would help.

My life is in a shambles. I have to walk with a cane due to poor balance relating to the drop foot/toe, my knees ache continually, my clothes don't fit anymore due to all the water retention (I've gained 40 pounds, and this is after I lost 120 with gastric bypass surgery 9 years ago), I can't clean my house or walk more than a few yards. My mental capabilities have suffered due to lack of sleep and pain meds.

I am at my wits end. Sometimes I just wish I could have my legs amputated (not seriously) but that's how bad the pain is. I had looked forward to many more years helping to take care of grandchildren and great-grandchildren, but now it's them taking care of me. I hate this!

Don't know what I need, really, just someone to listen and understand. Thank you . . .

[Louisiana]

Oh I am so so sorry to read of your dreadful situation. I know I can't help, but I send you many good wishes. I am wondering if you could be prescribed other painkillers? I have had excruciating pain lately and I had to have morphine patches for abut 6 weeks and I slowly came off them. I got so very down due to the pain, as somehow it's difficult to think of anything else when one is in such pain. My heart goes out to you. have you had morphine?? I must say the patches certainly helped me. I have spinal fractures due to osteoporosis, and lots of other problems. I know it must feel awful having to be looked after, but you are blessed to have family around you....lots of people don't. Do keep posting and rant and rave as much as you like on the site...it might help

[Starwriter in reply to Louisiana]

Louisiana, thank you for replying. I am sorry you have so much pain. May I ask how old you are?

I have not had morphine, but I thank you for suggesting it. I will see my doctor just before T-giving and I will ask him. At least, thank God, I am retired so I don't have to deal with going to work anymore. I am beginning to feel a little depressed and this is not good. I have been on Paxil for years, due to clinical depression I've suffered since the age of fifteen. Paxil has helped immensely, but now . . . I don't know. I try to keep very busy with "things," time-consuming things that require concentration so that I am not thinking about the pain all the time. I play a lot of computer games, do crossword puzzles and other word puzzles, read, and write. I have even been known to bake a cake or make a meal at 3 a.m.

Where in Louisiana are you, if you don't mind my asking. My late husband and I lived in New Orleans for three years back in the mid-80's.

Again, thanks so much for replying.

[Louisiana in reply to Starwriter]

I would urge you to ask about the patches. Right, here we go in answer to your two questions!!! Firstly I am 76 - ugh.....so I can't really complain, as I have survived to this ancient age Secondly, I don't live in Louisiana. Everyone assumes I do, but when I went to sign up to this site I was asked for a User Name and every name I came up with had been used! So, in desperation I decided on Louisiana (I knew noone else would have come up with that!!!) I am British born and raised in London. I did live in America for about 14 years but have been back many a year now I have lived in Norfolk, England (which is in East Anglia on the map) for about 30 years. My reason for coming up with Louisiana? Well, I have been trying to find penfriends for the prisoners in the State Penitentiary at Angola, Louisiana for over 28 years now and it has been a large part of my life, so the state name came to mind! Bet you didn't expect that answer! ?????? I would love to have visited New Orleans but never had the money and it's way too late now as I couldn't possibly manage the journey. Katrina was a disaster and I gather not all of the homes have been replaced., and a lot of the relatives of the inmates have had to remain in Texas after they were sent there at the time. I really really hope you ask about the patches and that if you use them they will help.....I will be watching for your post about it! Take care - and "have a nice day" as they say in your country

[daedreams61]

I agree about the patches. I'm on Fentanyl due to Morphine allergy and they do help. I'm on a really low dose but it has made a world of difference. The really great thing about the patches for me is I don't feel drugged like I do when I take pain pills. As far as the water retention you should be on Lasix or other diuretic. Please follow up on this as it is very concerning!

[clairelis]

I'm so sad to read your story. It must be dreadful. You say tongue in cheek you would like your legs amputated but do you know what? Even if you did the pain would likely remain (phantom limb pain) and why? Because all pain is created by the brain. Very real excruciating pain. Most of the time looking for a physical cause is unhelpful. I really recommend you read any book by dr john sarno or Howard schubiner or Ronald Siegel. They discuss the importance is stress, it's role in creating pain and strategies that really work to overcome the pain. It could give you very real help. Best wishes.

[Kerryjess]

Star writer, I'm so sorry to hear you are suffering so much. I can empathise as I have suffered from back pain for over 30 years (I'm now 59).

Like you, I thought my retirement would mean plenty of time to play/look after grandchildren and great-nieces and nephews but this has not been the case. I was told by a surgeon that he didn't think I was a good candidate for surgery in 2011- I had bulging discs at L3/4,4/5 and 5/S1 and spinal stenosis. By 2012, I was getting worse and the sciatica was crippling. I was using a rollator outside and a cane inside. My balance was poor and I was not coping well with all the pain, despite being on a high dose of tramadol and regular spinal injections.

I had another orthopaedic appointment and this time, the dr said he couldn't guarantee the back pain would go but he could deal with the pressure to relieve the leg pain. I made the choice to go ahead on the basis that I knew there was only a 60% chance of improvement because I reckoned I was losing so much mobility that there were very few options open to me.

Two years later, I still have no leg pain. I do have some back pain and there are certainly limitations resulting from the surgery-3discs fused and rods and screws inserted to stabilise the back. I can walk straighter, though I still need support from a rollator or cane because of other issues with knee and hip, which are going to have to have surgery.

Pain? I was able to control it with Tramadol until recently when I was given Fentanyl pain patches. I started on 12.5 and had to increase it to 25. Lidocaine patches are great if your dr will prescribe them. I found they gave me great relief.

Grandchildren? I do as much as I can when I am having a good day. They know I can't do certain things and accept that better than I do! I miss the ability to do the physical things and I can't lift them as I would love to do. I have a new one due in the spring and hope to be able to help out as much as I can. It's hard to accept the limitations imposed by pain and physical problems but the alternative is becoming so wrapped up in yourself and your problems that you can't enjoy them growing up.

Are they old enough to enjoy outings to indoor places which you can access? I have had to adapt my outings to fit my needs. D you enjoy swimming? Join them at the pool with their parents for extra supervision. Don't shut yourself off from the fun and remember that children accept us for what we are better than adults do at times and you are helping to build up their memories-you don't have to be fully mobile to do that!

Sorry for the long post, but you struck a chord with me this morning with your post!

Take care xo