Anyone else feel Isolated and not go out due to chronic pain?

@charliegirl
Hi Lori,
Sorry I am so late replying to you. I seem to have missed a whole day’s worth of e-mails.
Thank you for your very kind words and thoughts and advice. It still amazes me how people that I worked/ran/volunteered with, whom I really thought were more than friends I just happened to have been people I happened to have worked/ran/volunteered with.
But you are correct, I do have a few good friends. Two have their own but different chronic issues. The nice thing is you can say things like “this week is the best I have felt in ages” (which I can honestly say I have not uttered in at least a decade) and they know you are not healed or fixed you just feel a warmer shade of feeling like death warmed over.
Sorry for being so very long winded. Just really wanted to say thank you so much for your kindness and thoughtfulness.
Don

@kaki068 I’ve had the same feeling!! If any of the doctors that continually dismiss my pain severity could experience what I’m feeling they would not be dismissive! I’m so tired of being told keep doing what you are doing…and what I’m doing is not working. I miss my life when I was working at jobs I loved, dancing 3-4 times a week, going to plays, traveling. Now I sit at home in too much pain to do much of anything. When I do go out it’s so painful it’s not worth it.
I can’t take opioids do to digesting issues so the spinal and abdominal pain is severe and constant. Other meds don’t work. Shots haven’t worked.
Anything I’ve missed???

@cynbell I have found a reputable well established pain treatment clinic where I am prescribed the pain meds I need. I have to be seen every single month. A person must sign a lengthy pain contract with a lot of rules you must follow. You have to 'toe the line'. no messing around like missing appointments or complaining about paying for urine testing whenever the doctor requires it. If you start acting out in the clinic or pushing for a higher dose than they have decided you need, you are can be dismissed as a patient. I also take what is known to treat my fibromyalgia and neuropathy, Duloxitine and Lyrica/pregabilin. I have take these two meds for 10+ years and I have had no problems. I ran our of Pregabilyn over a weekend and I learned how mush those have been helping me. I have a rheumatologist who prescribes the last two meds. We must give these meds a chance. Take as prescribed for a month to 6 weeks. Keep a journal every day of how you feel. This is valuable to take to the doctor. too. Read all you can about alternative or holistic treatments for your disease. We have to build a team of doctors to help us. I hope this helps someone!!

@charliegirl
Hi Lori,
Sorry I am so late replying to you. I seem to have missed a whole day’s worth of e-mails.
Thank you for your very kind words and thoughts and advice. It still amazes me how people that I worked/ran/volunteered with, whom I really thought were more than friends I just happened to have been people I happened to have worked/ran/volunteered with.
But you are correct, I do have a few good friends. Two have their own but different chronic issues. The nice thing is you can say things like “this week is the best I have felt in ages” (which I can honestly say I have not uttered in at least a decade) and they know you are not healed or fixed you just feel a warmer shade of feeling like death warmed over.
Sorry for being so very long winded. Just really wanted to say thank you so much for your kindness and thoughtfulness.
Don

@dancer7000 I didn’t understand the digesting issues. There are million different kinds of narcotics and opioids and 1 million different kinds of digesting issues. I have IBS and damaged intestines, which have taken me six years to repair due to not knowing I was lactose intolerant our medication’s have lactose in them and they cause stomach aches so I switched medicines when I can and I take Lactaid pills when I can’t. That fixes the digestive issue part I also I’m on the FODMAP diet for IBS symptoms and been on that for five years and that 100% fixed all my digestive issue problems as long as I don’t eat things I’m not supposed to like garlic and onions. It took a bit of work to find the right opioid that allowed me to be pain-free and not acquire intolerance or a feeling of getting high. The trick was to take just enough to start that it knocked out the pain and I didn’t feel like I was on drugs. The nerve blockers didn’t work for me. I was lucky that I had doctors who were willing to go on the journey with me. I lead a very joyful and productive life and because I’m an artist, I value my isolation more than others. For others, I recommend that they find a passion in life that they can pursue in isolation and then they will wonder why they ever regretted isolation! As far as I am concerned, the best things are done in isolation cooking, reading, enjoying a movie, exercising and doing artwork… Not to mention catching up on emails. Find a way to engage that put you in contact with other people where you can offer your skills virtually.

@loriesco

I have some commonalities with you. I am on a special diet for celiac disease so I must be gluten free for the rest o my life. Last year I had success with reducing but not eliminating neuropathy. This winter has proved challenging for that and is also a reason for my isolation. Like you, I use the alone time for cooking (made pesto today to put on my salmon) and enjoy reading and watching certain TV shows. My dog is great company. I am having some pain recovering from shin shave biopsy but will not use drugs like gabapentin to deal with it. I do daily exercises--mostly stretching and upper body free weights in sitting position. I think the think gurus have conditioned us into viewing aloneness as a problem. Not so!

@arcuri24 there are NOT a million different narcotics and opioids. Only a few.

@charliegirl Thank you for being helpful. However, I live in Alaska, small town with 2 pain clinics, both part-time as they are based in Anchorage. Both of them said I was "drug seeking" I was crushed. I hadn't mentioned any kind of medication. I did go back to 1 and had an epidural steroid injection, I had high hopes, but that failed. Now they, Neurologist, and Primary Care Physician want me to get a spinal stimulator, without even TRYING any stronger medication. I'm going to Anchorage for the consult, and I'll do the trial, I would do anything at this point. But it boggles my mind that they jump from using off lable antidepressants to an invasive surgical intervention. I realize that opiods not used correctly are bad, but this disease is lifelong. It seems to me they would let me try something. This kind of thing is why the suicide rate of chronic pain patients has gone way up since "the war on drugs" maybe I'm feeling sorry for myself, but I have tried so many meds and home remedies that people would laugh.

@dancer7000 I didn’t understand the digesting issues. There are million different kinds of narcotics and opioids and 1 million different kinds of digesting issues. I have IBS and damaged intestines, which have taken me six years to repair due to not knowing I was lactose intolerant our medication’s have lactose in them and they cause stomach aches so I switched medicines when I can and I take Lactaid pills when I can’t. That fixes the digestive issue part I also I’m on the FODMAP diet for IBS symptoms and been on that for five years and that 100% fixed all my digestive issue problems as long as I don’t eat things I’m not supposed to like garlic and onions. It took a bit of work to find the right opioid that allowed me to be pain-free and not acquire intolerance or a feeling of getting high. The trick was to take just enough to start that it knocked out the pain and I didn’t feel like I was on drugs. The nerve blockers didn’t work for me. I was lucky that I had doctors who were willing to go on the journey with me. I lead a very joyful and productive life and because I’m an artist, I value my isolation more than others. For others, I recommend that they find a passion in life that they can pursue in isolation and then they will wonder why they ever regretted isolation! As far as I am concerned, the best things are done in isolation cooking, reading, enjoying a movie, exercising and doing artwork… Not to mention catching up on emails. Find a way to engage that put you in contact with other people where you can offer your skills virtually.