Chronic Pain

Hi, This is my first time on any online forum. That is how desperate I am.

Before June 4th 2006 I was a very active 54 year old woman, ladies golf captain, competitive bridge player, computer specialist, wife, mother of 7 adult children (3 mine and 4 step), badminton captain, volunteer etc.

I have had back issues since I was 17 with 2 minor surgeries, one at 16 and one at 17, but I have always managed to overcome the pain, or muscle spasms or what ever.........no nerve pain involvement.

I injured my back on June 45h gardening and digging. The nerve pain (sciatica) was acute with muscle spasms that didn't allow me to stand up.

I was in bed for a year and a half almost completely except for doctors appointments, therapies and medical tests.

• My marriage fell apart and ended last November leaving me pretty much alone. I am still grieving the loss of my marriage and husband.
• My seven children have their own lives all over North America.
• My parents are still alive and live near by. They are more active than I am and they can't understand why it is going on so long.
• My 2 siblings have their own families and their own health issues to cope with and don’t live nearby.
• My close friends now call only occasionally.......they have moved on with their lives and they don't know what to do. If they could only understand what a gift to me it is just to have some one to listen sometimes. They don't have to try to fix me.......just listen so that I can let some of my frustrations out.......not at them just release it.

Now, after 2 1/4 years and many MRI's the diagnosis is a combination of things, of course.

The neuro surgeon thinks that I have central pain from the surgeries when I was 16 & 17 which is just now giving me symptoms because of the injury to my Piriformis muscle while gardening.

The Physiatrist (for those not from Quebec, this is a doctor specializing in Orthopaedics but does not do surgery) agrees with all the pain medicines for the Neuropathy and he gives me cortisone shots in my hips and at different levels of my spine regularly. The shots help alleviate the acute pain for short periods of time. Sometimes this works better than others. He also agrees with the twice a week treatments given by my Osteopath.

My neurologist is mostly just interested in any changes to my nerve damage and function. (slso the changes in my MRI for degenerative disk disease and foraminal narrowings). She is in charge of the medication aspect of my treatment along with my family doctor.

My Osteopath, Bruce, is fantastic. He knows my body inside and out. He has been able to help relieve the acute pain........even if it doesn't hold.

My family doctor is also a great support.

I have also been seeing a Psychologist who has really seen me through some difficult times. My life is mostly having medical appointments and therapies.

They all agree that they don't want to do tradition back surgery on me for fear of making it worse. They all agree that the type of laser surgery offered in the states and not in Canada might really help me BUT this will cost me $30,000 which I don't have. They all agree that I need to strengthen my core muscles but I can't do that until the acute pain is less. How can I still have acute pain 2 years later? They also all agree that I have acute chronic pain.

I can't sit for more than 15 minutes without paying for it later. I am sitting on the sciatic nerve. It is better in the morning but the gravity of being upright on my spinal nerves progresses during the day and by 3 pm I can't do anything......even prepare dinner.

What spurred me to write all this and try the forum is because yesterday (Friday afternoon) my mother visited and said I needed to change my attitude and ignore the pain and join in. She became angry when I said she didn't understand. She went home abruptly without working through our communication problem. I cried all Friday night and most of Saturday. It took be until Sunday to get back some self confidence to continue my life as best I can. What a waste of what little energy I have. How can I handle situations like this better?

I have also been struggling with a chronic sinus / tooth infection for the past year. I had the tooth pulled 4 weeks ago. I have a dry socket, the dentist chipped my upper jaw bone in the process of pulling the tooth and this may need more surgery and the sinus is still swollen and productive. I tell you this only because this pain is the kind of pain you can ignore and continue with your life as my mother tells me to do. I do ignore it...........it is so secondary to my back and leg pain and such a different pain.

The acute chronic sciatica, muscle spasms, leg and back pain drains me of energy so quickly now. It has been too long and my muscles have atrophied. I can be doing something in a somewhat normal fashion (example shopping at the grocery store) and all of a sudden my legs feel like dead weights. I literally am dragging my feet using the grocery cart to support me. I head to the door, car and home as fast as I can. If I lie down for an hour so that my legs recuperate, I can then move normally again for short periods of time for the rest of the day.

How do I better explain all this to my family and friends? I have tried but I also understand that they can’t understand and because they can’t understand they pull away from me.

How do I let them know they can't fix it anymore than I can wave a magic wand and fix it myself?

How do I tell them that it is so important to me now that I am alone to have contact with them regularly and please friends and family, forgive me if I cry when I hear all that they are doing that I can't do with them?

Hello again Deborah

I left you a message in the introductions area and thank you for giving us some back ground so we can have a better understanding of your pain issues.

Hugs dear heart
Your not alone anymore and we welcome you with open arms.
http://forums.healthcentral.com/discussion/chronic-pain...61017/m/52110033/p/9

Gentle Hugs
WE CARE
Betty

I understand your challenges with friends and family not understanding your pain and always wanting to "fix" you. I'm sorry you are in so much pain and feel so alone. I feel that way too alot...which is how I found this website. So far it's a great community to connect with, and gives me an outlet for things I don't feel I can share with family or friends anymore...my pain is going on 8 years.
I hope that knowing there are others out there will help you too; and I am happy to talk anytime!
Many hugs!

My aunt suffers from chronic pain. She uses some tabs for treatment (she orders at costmeds.com ). These pills make her feel better. Ask your doctor for advice, which med is better for you. Hope, it will be useful.

Dear Deborah,

There are so many things that we seem to share and just by reading what you wrote made me feel not so alone and I am hoping a reply will help you not feel so all alone as well. I too am new to this site. I am soon to be 54 and am also in intense pain around the clock.

I have stenosis in both my cervical and lumbar spine and 80% of my discs are severly damaged and the cartiledge in between them is disappearing. I have quickly progressing degenerative disc diease. I understand the sciatic pain, to me I envision a nasty 'Pac-Man' character chomping on the nerves in by back refusing to let go.

I have osteoarthitis which has destroyed most of the joints in my body. This resulted in needing total knee replacements in both knees, I did them at the same time 20 months ago and my left shoulder 2 months before that.

In 1999 (which was the last year I was able to work) I was told that I was in liver failure due to contracting Hepitits C from a blood transfusion in 1983 during emergency surgery due to my intestines being obstructed. I found out after the operation that I have Crohns disease. I had 7 more surgeries due to the Crohns.

I think I am sharing all of this because I know what it is like to have many things wrong at the same time and how hard it is to cope with it all.
I used to think I could just deny the pain or rise above it and would beat myself up when I failed.
Over the years my coping skills have grown. There is no way to deny pain that stops you in your tracks and drains all the color out of your face.
I do not share my trials with very many people and still try very hard not to make it the main topic of conversation, but I do let the people who I love the most and who love me know when I am having a hard time.
I have been keeping a journal since I was 10 yrs old and I use that now as a place to dump my feelings. In it I scream and shout and stamp my feet and I cry, anything to let the feelings that chronic pain brings up in my heart out. I truly believe that we need to release the feelings of anger grief rage saddness get them out or they will only intensify the physical pain.

I saw a counselor for a while and she taught me how to scream into a bunch of pillows to release my rage at my body. I shout with or with out words from deep inside until I feel finished. You will be surprised at the calm that follows,I was.

I know how it feels to to do physical things like take a shower or get dressed and then have to lay/sit down before being able to do another thing because you are worn out from the effort of doing things everyone else takes for granted.

In the last part of you post you wanted to know how to let those you love what is really happening with your body and how that effects your daily life. You ask 'How do I....

for me I first had to work through my own feelings of guilt,failure and anger....which is actually an ongoing process. I kept repeating to myself 'this is not you fault' over and over like a mantra.

Then just like you told us in your post tell those you love how it really is without being defensive. Let them know you still have a life and that you want them to be a part of that life.

When I began to accept my limitations while still living a life as full as I am able things with my family got better. That is not to say that they can know how I feel since they have bodies that work normally. But I too have a body that works even if my normal is not like theirs.

I have gone on way to long but I hope something I shared will help you to feel less alone. I hope I hear from you and that you are ok.
Meryl56