How is my family and friends supposed to cope with my debilating chronic pain . . .

My friends and especially family do not want to hear about my debilitating chronic pain. I have a cousin who has something similar and she is in a wheelchair. Sometimes, I wish I was. That way people would know I was different and not have the expectations they currently have from me. My family is sick and tired of this ongoing situation. My mother, who has passed, taught me never but never give up. I have pursued trying to diagnose my situation myself.

My internist of twenty years went off on me crazy! She said she has no other patient in her practice that comes to her office as much as I. She is the very best in knowledge, however I am switching internists. It really effected me when when she kept on repeating her complaint about me. I am polite and considerate. I cannot believe for such a scholar, she would say those things. My husband said she is human and just overlook what she said.

I am 61 and have a 17 year old son and 22 year old daughter. They ask why I do not do more with them and how could I let the house go to such a mess. My husband of 40 years works from home. He does the grocery shopping and most of the laundry. I have a strong faith, but with the escalation of my symptoms, I am finding it harder to turn to my faith.

What do others do with chronic pain and nobody to talk to about it. I have had psycho therapy and went the medication route for anxiety, but honestly the medication Effexor XR 300mg daily I have been taking for so many years that it is not effective any longer. It also gives me low sodium. Effexor is one of the harderst drugs to taper off, especially with the escalation in pain. I cannot take any more symptoms.

Long winded . . . I am sorry. I started an online pain journal and gave my husband my user name and password if so chose to look How do you cope with no verbal outlet? I sincerely respect you and your opinions.



I have made a few paragraphs in your post to make it easier to read. Some of our members have tracking problems when reading. Thanks

Post Edited By Moderator (straydog) : 4/11/2016 6:56:54 PM (GMT-6)

Hey Rhonda.Welcome to HW.Just curious.Do you take anything for pain?

My PCP would write me something for pain,but it's better for the both of us that he referred me to a Pain Management Doctor.

There's no questions after your 1st visit of why you need pain medicine.It's a question of what and how much now.

I have 1 buddy that I can talk to.He's about as messed up,physically,as I am.

I find this to be a good outlet.When I was inpatient rehab after my knee replacement I looked around the Physical Therapy room and saw that I'm not that bad off.

No one likes being talked down to by a Doctor.I hope you find a Doctor that treats you right.Gets your pain under control.

I rambled.

Take care and God Bless.

Rick

Hi Rhonda. If you were to ask my sister, she'd say I'm a hypochondriac like our Dad and his mother. I have no idea what my brothers think. My daughter and grandson live with me. My daughter has Cushing's Disease and I swear sometimes, between her symptoms and mine, it feels like we're having a competition on who feels worse on any given day!

When I see my partner, I try not to talk too much about my pain, but I do not hesitate to tell her if I'm having particular trouble with any aspect of it. She really does not like to see or hear about me taking my pain medication. She had dated someone who had become an addict. Out of respect for her feelings, I try not to talk much about it, but do feel I have to tell her if I've had to take a dose. Being open and honest about it, while upsetting, is better than 'secrets'.

I try not to focus on what I 'can't' do, but what I 'can' do. Vacuuming is a tough thing for me but washing dishes is not too bad. I can do my personal laundry, but blankets are taken care of by my daughter.

I get much solace from my garden, but in order to not add to the chore list, I'm reworking the plantings to make it as low maintenance as possible. I'm adding more hardscaping as opposed to trying to keep a lawn. This way, I'm not adding to anyone else's chore list but will still be able to enjoy the outdoors.

Perhaps there are some modifications you can make, too. I have wire shelves now instead of plank shelves. It cuts down on dusting chores. I removed most of my knick knacks for the same reason. Small things can make a big difference.

Coming here, where people 'get me' has been a huge help to me. I hope you will find it the same.

Rhonda, you need to read the post here at the forum about feeling guilty. You have nothing to feel guilty about, you did nothing to cause these health issues its not something that you made happen. It sounds like many of your health issues have not been treated properly & correctly over the years.

Something I think you are struggling with & all of us has gone through this is, unless other people have had some type of chronic illness they cannot fathom what it is like for a person that does have health issues. A vast majority of us look fine, but we are far from that. Unless most people see blood & guts running all over they don't make the connection because we look fine out on outward appearances. Your husband is probably frustrated because he can't fix you & make things right. Your children, well they are young & they just don't get it, that age they never do. But again, they are at the age they should be helping you. It sounds like those kids need to be educated on how to have compassion for others. There are thousands of parents out there dealing with medical issues much worse than ours that raised families & did so successfully.

You may want to check out the Fibro forum here at Healing Well & see what those members are doing for treatment. I believe most of them are under the care of rheumatologist. There several medications available to treat Fibro.

Have you considered getting some professional help? May be that is something to consider. I saw a wonderful psychologist that was so helpful. It takes a really strong person to live this life.

Keep us posted on how you are doing.

Keep us posted on how you are doing.

Hi Rhonda and welcome to the CP forum.You have been given some very good advice by some very long time CPers. Our age is off by a year and I also have a 17yr old but she was the last of 6 not my first. I also raised her as a CP mom totally where as the others were older when I became disabled. Needless to say she and I have a remarkable relationship. There were many things I had to learn to do differently throughout her young years and although her childhood was somewhat different than the others because of this she turned out to be one awesomely empathetic girl. She values life of all varieties and she understands that sometimes people have limits on their abilities but that is different than disabilities.

Guilt needs to be reserved for the mistakes you make not in the hand that life dealt you as you have little control over that. Because my kids would naturally worry I speak little of my pain and less about any treatment protocol I use such as meds. They are aware of the medical history in case they ever have need to know,they are aware of the many knee procedures and that there are spinal issues but they don't have much more than whats in the records. Life's short and they deserve to live it without fear for me or concern about my future. Kids are invincible they believe that parents live forever and I see no reason to burst that bubble until it has to be. It would terribly undermine their happiness. So I complain to those who get it,who understand it and who has the knowledge not to judge it.

Keeping a pain journal is a great thing to do,it not only gives you a outlet but can be beneficial to your prescribing Dr and other healthcare team members. Belonging to HW has been a awesome opportunity for many of us myself included. I have met people from all walks of life here and have been here long enough to have made some good friends but above everything I can rely on the forum to hear me and not judge.

Your looking at the things you can nolonger do instead of looking for how you can do those things longer. I basically relearned everything I had been taught about the right way to do things. The first thing to learn is that there's no right and wrong ways. On good days prepare a meal and double it freezing one for another day. It doesn't take anymore effort or time to make two meatloafs than one. Soups,chili's and casseroles are easily doubled and readily stored for the worse days. My desk chair with rollers has rarely seen the desk since its adjustable in height and lumbar support its great for dishes and laundry and I move easily around the kitchen from counter to fridge,stove and pantry while cooking or cleaning. So there are many ways to do things you just have to be creative when you have issue's.