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

@joannef20

Unless you live with constant that you don’t even get a few hours a day of Chronic Pain that is over a seven you’re not living. I’m tough I’ve had migraines since since my 20s and kind of fibromyalgia and mild gut pain but now the central medial abdominal pain syndrome in my gut down the middle. Nothing touches it except for enough fentanyl at the ER and they won’t do it people after time who are your family and friends gonna give up on you because you start isolating when you’re this sick and they’re tired of hearing there’s no good news. Nobody likes hearing that it’s hard on my spouse to not yell due to the pain and pushes my kids away, and my friends are kind of forgetting me because I’ve been sick too long and I can’t do anything with them and they’re living. They’re full lives. I don’t make Facebook because it’s just a show off thing and I don’t need to see people loving in life and taking a vacations and doing all the stuff that I can’t do anymore I don’t need to add to my depression

@rt061069 look up SMAS, MALS, NCS disgnoses.

Oh girl! I feel your pain. I feel exactly the same way. When I do go out, it's hard to socialize and be actually joyful because of pain....the pain that no one else can feel or completely understand how it can be so bad.
I am psyching myself up with strategies to tolerate a 2 day away from home family reunion with lots of driving.
Deep breathing and meditative mental imagery are some of my strategies. It may be the last time I see my 95 year old father (in law) so I have to be really strong. I am doing it for him as I am a daughter to him.

@snu
Sorry wrong reply to wrong person. I'm new
I won't drive anywhere unless I have to. It hurts too much and then I get worse. Good luck hunny!

Good morning, everyone.
I can relate to the chronic pain issue causing you to basically be removed from the real world. For the past 3 years, I have been dealing with right-side oblique/flank muscle cramping that goes from when I get out of bed in the morning until I go back to bed that night. All day, every day at an average pain level of 7/8. Rarely does it drop below this, but it gets worse depending on my activity level throughout the day.

This has caused me to cancel a vacation and avoid scheduling any type of activity that uses my core muscles. So you can see the problem, how do you do anything without using your core muscles? I cannot do activities I've done for most of my adult life; tennis, martial arts/boxing, stair climbing (we have a group of climbers that meets every weekend, and we have been climbing a 75 floor building every September for charity), and I can't even do basic exercises for my physical therapy, as just those simple movements lock up my side and I have to lay down.

For the past 6 months, the only reason I leave the house is for doctor appointments or physical therapy. I still have not driven a car since October of last year, as I do not want to take the chance of a severe cramping episode causing an accident. I am basically a hermit, coming out into the real world a couple of times per week, but even this will be stopping after this past week's experience with my pain. This physical therapy place I've been going to for three weeks works on body mechanics, proper movement and lifting techniques, and breath work as well. 6 sessions over three weeks has not improved anything, and it has even resulted in more pain over the past few days.

I have been to chiropractors, physical therapists, acupuncturists, and I have tried trigger point injections as well as Dysport (a version of Botox the insurance approved, as they would not approve Botox), all with no improvement at all. I have had 3 epidurals, with the 3rd one back in February this year causing more pain than I had before the procedure. On top of the additional pain, my right side muscles are cramping easier as well.

And I sit at home all day, every day, researching, watching videos, writing to people all over the world, thinking that someone, somewhere, has heard of this, had this, or treated this, as I cannot be the only person in the world with this medical issue. But the longer this goes on with no one having any idea what is wrong, and the more I read about the people commenting here on the Mayo Clinic site, I am starting to believe this is what the rest of my life is going to be. I have been going through this for 3 years, but that is a fraction of the time many people on this site have been dealing with their conditions.

This is so sad that this is what is has come to in the US for medical care. I served my country, I worked for 30 years and retired debt-free in my 50s, I saved what I needed to for retirement, and within a year and a half of retiring, this happened. I've done everything they say we are supposed to do in the US, worked my butt off, provided for my family, with two successful grown children as the result, served my country and was very successful in my career. And now I'm a hermit with no end in sight to my pain.

@marcd2k
I can definitely identify with what you are going through. What caught my attention in your note, was the fact that you have right sided pain. I too have the same issue. I think I had some type of muscle damage after using my body outside in extreme heat in the summer, plus I have Neuropathy due to TS – HDS antibodies complicated further by MGUS and SIADH. I believe that this aggravates the right sided muscle issue. My pelvis is completely out of whack due to breaking my femur in an accident in 2012
( poor repair) & now it’s affecting my back, piriformis muscle, as well, as everything is connected.. I too have tried acupuncture, Physical Therapy, and steroid injections, other different medication’s and medical direction . I’ve been in and out of the hospital three times now for low serum sodium. I was taking hydrocodone for pain, but the complications for that began to outway the relief for the pain. I am on Lyrica and Ambien so I can sleep, IVIG infusions and high blood pressure medication’s . Don’t feel that you are alone as so many of us are in chronic pain and our daily lives are very negatively affected. I am also seeing a psychologist who specializes in helping you manage pain. The trail of days spent in the doctors office is endless, but I still have hope in finding the right doctor eventually and trying to enjoy what I still can do despite the pain. I have to rest frequently and be especially careful avoiding hot days outside. I get up early at daylight and head outside till about 8:30 due to very hot days in southern Illinois. I’m inside the rest of the day, and do not socialize much if at all . I go nowhere as it just always makes me pay a price. We have 5 acres, horses, dogs, cats. They are all a must to take care of and maintain. My husband is very supportive and I know if I stay active to the best of my ability each day, I am doing my best. I struggle daily with trying to be optimistic and realize that I am lucky to be in my 70s before all of this cascaded. I keep telling myself that the “practice of medicine”… it’s just that. The doctors try to do to the best of their ability and may or may not not do it right. I have faith, as time goes on and they have more knowledge accessible to them for our conditions, I will find some relief.. I keep on plugging away, despite the isolation and changes in my life. Friends, withdraw, family does not understand, even though they would like to, and life goes on.

@lreed333 Hello, and thank you for your message. Something I have considered, but have not done yet, is see a psychologist. This is something I will be looking at this week, as I am looking at anything that is medically safe and actually has a chance of working.

I have not been on any medication since January. There is nothing over the counter that works on my pain, and the last prescription I stopped taking was Lyrica. I had severe nerve pain in my legs a few weeks after surgery, and the Lyrica worked quickly for me. I weaned off of it back in January, from 3 times per day, to two times, then once a day during the last week of January. I was nervous because the leg pain was terrible, it kept me awake all night. But as soon as I stopped, everything was back to normal with my legs.

Good luck to you and your search for the person that will finally know what to do. I am keeping that same mindset, that I am not the only person in the world this is happening to, and I will eventually find the person that knows how to treat my condition.