Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

First entry here. So hello.

Feb 10, 2020 9:57 PM

Sorry for formatting or spelling mistakes... I suck at this.

Been struggling with on and off pain for some time now. They found a whole lot of white spots on my brain and said is was unspecified demyelinating disease.

I am on meds that help with the pain and help with keeping me awake despite the exhaustion. I have also been diagnosed with sleep apnea and gastroparesis. It also hard to talk about but my sex drive and function has also plummeted... like alot. I also rent to have my legs give out on me randomly.

I struggle with depression a bit more now too. This sucks... I am only in my 40s and should feel like I'm in my 80s. I push along working and keeping a strong face for my family. But I fear of how long I can keep up my work. I have to provide for them, I have to take care of them. My greatest fear is failing them. I hate this so much.

But I have to keep moving on one day at a time. My love for my family keeps me going. I have great wife who supports me 100% but inside I feel like a failure as a husband sometimes. I have to tell my self my head is lying to me and move on through the pain that will randomly hit in random places and with random intensity.

Sorry for the long post/rant.. just had to get it out. I hate this, its every day and I always worry what is in store for me the next day.

Feb 10, 2020 10:57 PM

Peterhuzza, welcome to the community! You're in a safe place to rant or post long messages. It's a no judgment zone because even though we dont all suffer from the same symptoms or disease processes, we all suffer from chronic pain & other chronic health issues. But believe me, your post is nowhere near a long rant...wait until you see some of mine & other's posts. And it's ok to do so here. You are among friends here. Yet we are a family who cares too, because we understand.

I'm 58 and have had some chronic pain conditions for several decades (20-30s), like OA, DDD & other spine issues, migraines, IBS-C, TMJ-D, and many others, But over the past 13-14 years I've developed multiple autoimmune (AI) illnesses that have truly taken a toll and literally aged me: sjogrens, fibromyalgia, hypothyroidism, mixed connective tissue disease (CTD), etc. The last one is responsible for an injury to my hip in 2018 that although surgically repaired has failed to heal, and now the hip socket has deteriorated rapidly, so I'm having a total hip replacement next week. I've had a complete lifestyle change, having become disabled in 2010 following a pelvic mass surgery, which likely set off most of my AI illnesses. I too have had complete loss of sexual function, due to major pelvic floor dysfunction issues after that surgery. But if your wife loves you for who you are, she will see past that like my hubby did. He had prostate cancer surgery a year ago & now suffers some of the same pelvic floor issues & complete sexual dysfunction, so he really understands now what I've been dealing with. Marriage is more than the sexual intimacy...its a relationship of love, caring, understanding & emotional intimacy. I suffer mild dementia, short term issues too, along with fibro-fog forgetfulness in the middle of an action or sentence. Ugh, that's frustrating. I dont have apnea or gastroparesis, but I have pain induced insomnia & slow transit IBS-C, & other digestive tract issues, and they're no joke exhausting. It's very hard to struggle through some days, many days. But take your days one at a time, one step at a time. Rest as much between activities that you can.

Have you considered disability? It's horrible income, but if you're able to (I'm not) you can work up to 20-30 hours a week to get more income. They'll even help retrain you for positions that are less physically taxing on you. Unfortunately to get disability you pretty much can't be working when you apply, and the younger you are the harder. But with physicians supporting you, and a lawyer to help you (they get paid only a govt allowed amt after you get awarded the disabled status), it's much easier.

I need to get some sleep as I have another pre-OP tomorrow. Between my hubby and I this will be our 5th surgery in 13 months. Lol were having a race I think...just kidding! Maybe you can read through old posts and find suggestions that might be helpful to you. Be open minded to trying new things. Keep journaling, be open with your doctors & fire bad one's. Be open with your wife & family, rest when you need to & make the most of your good days. Remember we all pay for overdoing it! And it's normal to have anxiety & depression with what we all go through. Talking about it helps, so I'd suggest counseling. You can talk here too. None of us are failures unless we give up & quit trying to be the best we can physically be...not who others think we should be. Only you know your issues &;limits. And they may likely change from one day to the next. Sending you hugs love & prayers as a new friend, that you soon see a light of hope that you will get through this. πŸ˜ŠπŸ’žβ€πŸ™πŸŒ·

Feb 11, 2020 7:25 AM

Welcome to the community Peterhuzza! As FlappysLady81 said don't worry about rants or long posts. Everyone has done it a time or two. I'm sorry you have chronic pain. I have fibromyalgia, DDD, Osteoarthritis everywhere. FlappysLady81 has given you a lot of good suggestions. Again welcome to the community.

Feb 11, 2020 8:05 AM

Hi Peterhuzza Welcone from Shore )))) I have chronic fibromyalgia and back and leg troubles ))
πŸ™πŸ™πŸ€—πŸ€—πŸŒˆπŸŒˆhug gently

Feb 11, 2020 1:37 PM

Peterhuzza, welcome to our community. FlappysLady, said many helpful suggestions. I suffer from Degenerative Disc Disease
(DDD), spinal stenosis, Ankylosing Spondylitis. Psoriasis, Irritable Bowel Disease (IBD), Parkinsonism, and have had several spine fusions/laminectomies. I’m 65 years young. As far as Sexual function mine is 0. My hubby has been on BP meds for a long time as it really effecting his ability

Feb 11, 2020 1:43 PM

Sorry add button was accidentally touched I guess. Anyway please don’t let your inability to perform affect your masculinity. At first my hubby had issues with his own ability. In time he realized it didn’t matter. As FlappysLady said a marriage is much more. He was in his 40’s and he’s 68 now and ok with it. You are much more than just that and your wife obviously sees the other attributes that you have. Well anyways welcome to i our group😊 there is nothing that we don’t talk about. We’re there for you and want you to feel welcomed.πŸŒΈπŸ€—πŸ¦‹πŸ˜Š

Feb 13, 2020 1:55 PM

Thank you all for your replies and positive input. I have not yet considered disability because I am a bit stubborn and I will probably keep working until I cant stand any more heh. That or my wife makes me. I just wanted to do a quick reply to let you know I read all your comments.

Feb 13, 2020 3:31 PM

I would much rather be working if I could. Work as long as you're able, and as long as you can balance your work with your home life & health. Remember to put your needs ahead of your wants. Giving yourself adequate rest periods between active periods is very important. Hugs love & prayers as you find your method of balancing it all! πŸ™‚πŸ’žβ€πŸ™πŸŒ·

Feb 14, 2020 3:36 AM

Well let me get my hello in here to you as well Peterhuzza! Welcome to the community. You will find this a very accepting and safe place to share or unload as you need. I too suffer from chronic pain from PMR, DDD, Spinal Stenosis, Severe Nerve Damage, Fibro, and a list of other diseases that didn't ask my permission to invade my body.Enough about me! Glad you've decided to join us.

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