Patients Chronic pain
Topic of the discussion
Posted on 10/13/19 5:15 AM
I have fibromyalgia, which causes me to experience pain, which on somedays can be all over my body. I also will get migraines and suffer from intense fatigue.
The friends I used to have do not take much interest in me anymore. Probably because I cancel a lot or just am too tired to do anything after the day is coming to an end. Somedays, I feel like I want to do something, but then end up never doing anything. I then end up feeling alone because I have nobody to talk to or be with. Some of my family understands more than others and they try to help me and encourage me on my bad days... but then I have some that just will never understand and just think I am "normal" and that I should be able to just work all day or do something everyday and not be pain or not have any fatigue.
My family and some friends say "just deal with it" or "it could be worse." I have also heard "it can't be that bad" or that I am over exaggerating. I have had a difficult time dating also due to this... seems to affect everything.
Thank you for listening and looking forward to hearing from others.
Beginning of the discussion - 10/13/19Family, partner, and friends do not understand - feel alone https://www.carenity.us/forum/chronic-pain/living-with-chronic-pain/family-partner-and-friends-do-not-understand-feel-alone-1280
Posted on 10/13/19 6:14 AM
Hi fibrome. I know what you are saying and definitely can relate to you. It is unfortunate.... For me I have severe osteoarthritis. There are days where I am so stiff and sore, I don't really want to get out of bed, but have to push myself. But after I push through the day, by the time I finish the day, the last thing sometimes that I want to do is go out and do more... I want to get home and relax and be in comfort and relieve my pain.
My partner does not understand the pain I go through and I guess I understand because she does not have osteoarthritis, thankfully. She does help me but there are days that I complain about my pain because it is intense and she becomes short with me, but when she does something that she can't control, if I was to do that she would be upset.
It is a struggle living with chronic pain. Are you in pain everyday with fibromyalgia?
Posted on 10/15/19 7:05 PM
I can definitely relate to this! I'm 78 years old and have chronic pain due to traumatic arthritis and nerve damage in my right hip. My partner, however, is the same age but in great shape, no physical problems, but he definitely has a patience problem - he often gets annoyed with me because I walk with a cane, move slowly, have difficulty going from standing to sitting and vice versa. He's fully convinced that if I would only put my mind to it, exercise, and take the supplements he prescribes (vitamins and minerals - about 20 different pills a day) that it will result in reversing both the arthritis and nerve damage so I'll be free of pain. He refuses to understand that no matter how many supplements I take and, in fact, no matter how many medications (prescription or over-the-counter) I take, they will not cure either the arthritis or the nerve damage. It's a constant struggle for me to refrain from losing my temper and telling him exactly where to get off, but I often do get sarcastic and say things like "yes, god" or "oh, well, I guess you know better than the entire medical profession, right?"
UPDATE 9/5/2020: I'm now 79 and scheduled for hip replacement surgery on October 6th, as recommended by the orthopedic surgeon who my primary care physician referred me to. He took numerous tests, the results of which show why the pain is so bad that I've gotten to the point that I say I'd rather be dead than put up with it any longer. The nerves are being compressed further, mobility is down to less than 10%, and I've "graduated" from a cane to a walker. My partner is arguing against it on the grounds that there's no guarantee, but if I don't go through with it there is a 100% guarantee that I'll continue to suffer and it will get worse. Maybe I should just go through getting rid of my partner, send him packing and out of my life, because he is more concerned about proving that he's right than he is about me. Of course I won't do that, tempting as it is, but I'm completely ignoring him and if he doesn't want to help, so be it. I have children and grandchildren who will be more than happy to step up to the plate.
UPDATE 11/7/2020: Hip replacement surgery put off until December 17th as preoperative testing could not be completed in time for October 6th and 12/17 is the earliest date available. The newest x-rays are amazing, clearly showing there is bone-on-bone erosion due to the deformity. My partner has finally accepted reality and has even prepared our second bathroom to accommodate postoperative instructions by installing a riser on the toilet. The riser, by the way, helps even now. I was a medical transcriptionist for 51 years before I retired, so am well aware of the pros, the cons, the possible complications, the possible outcomes of this kind of surgery - in fact, any kind of surgery - so I'm not going into it blindly. I never in my life thought I'd be looking forward to such major surgery but I sure am now. Oh, one other thing - marijuana is now legal where I live and I use the gummies (can't smoke as I have emphysema) which alleviate the pain by about 75%, which is a great deal when dealing with chronic pain.
Posted on 10/15/19 7:56 PM
I can relate as well. Chronic illness is no joke and unfortunately a lot of people think your faking it. My soon to be ex husband just can't deal with me so decided to shun me and our children. Its really for the best but just sucks that i didn't leave when I was healthy and now can't leave because I am not physically able. Someday we will find someone who can make us happy. Whether its a friend or partner. I have my children for support and great friends. I have ms. Good luck to all of you 🧡
Posted on 10/15/19 8:12 PM
Hello, I’m almost 69 years old and I have pulmonary hypertension, neuropathy in my feet, lower back and knee pain is bone-to-bone. I’m a mess. Oh, and I have depression also. Lol. I get up each day and let my dog Bubba out then sometime go back to bed for a bit. Most days I stay in my pj.s because I don’t go any where and people don’t visit me either. That’s all for now. With love to you all.
Posted on 10/15/19 10:18 PM
Hi Tankyhayes! I am 69 ( just had birthday on the 1st) I live in pain day in and out with neurapathy! I am tired of taking pain pills so I tried CBD oil and so far has helped immensely! Hope others out there in Carnity land will try some! Thanks for the insight!
Posted on 10/15/19 11:43 PM
@fibrome I relate 10000% I have Fibromyalgia as well and I’m in constant pain n there is not a day that I’m without pain. It’s hard to live life like this, I can’t hold down a job, n yet I can’t get my Disability either while the bills pile up
Posted on 3/17/20 10:03 PM
@OAme11 i totally understand what you are going thru i am going thru the same feelings
Posted on 3/24/20 4:11 AM
@fibrome Don't feel bad. Some don't understand when you can't physically see what's going on. Just keep moving forward. I have MS and my symptoms are similar.
Posted on 3/30/20 2:53 PM
@fibrome I understand how you feel. I have rheumatoid arthritis and because it's an "invisible" condition I think people tend to forget or not think about how it affects me. I can't be as active as my friends and I think they can't understand that sometimes. It makes me sad at times but for the friends who do get it I cherish them even more.