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New here and going through a flare-up.

Feb 21, 2016 10:19 PM

Hi I'm new here. I got diagnosed with fibromyalgia three years ago. Carpol tunnel syndrome nine years ago. And Justin case that wasn't enough just got diagnosed with atheritis in my lower back. I'm going through a flare-up at the moment. It's starting to get me down now. I get told to shut up and snap out of it. I'm used to being in pain so they can't see why I find it hard. Nothing seems to be helping the pain and I got hospital in two weeks to try new pain management and meds. I just can't see the light at the end. I can't even do my arts and craft's at the moment. I was thinking of getting a pet as animals comfort me. Not a dog as I wouldn't be able to take it out all the time. Maybe a bird? I could talk to it and at least that won't tell me to shut up and put up. Or am I being selfish? Any ideas would be welcome.

Feb 21, 2016 10:27 PM

If u get a service dog or comfort animal you can take it out where ever u want.its. thr law don't know where u r but they have specific rules for such thing as everywhere.

Feb 21, 2016 10:29 PM

Oh..sorry. I'm flaring too so I foeg to say welcome to the group. We are a group of wikd and crazy kits and kats and we live to help other pain friend like yourself. Feel free to ask any and all questions. Your likely to find a lot of answers to most of what u wonder about.

Feb 21, 2016 10:46 PM

Thank you. I would love a dog, but can't have one where I live. Plus my partner wouldn't like it. He thinks I make up the pain as it is, though he don't moan about the money I get. He's snoring his head off at the moment. It's so annoying I have not slept in week's. Maybe half an hour here or there but then the pain wakes me up. I suffer with bad depression as well so at the moment I feel like crying. Though I would get told stop being so stupid and snap out of it. I hate myself at the moment I just feel so down and it's not like me to be this bad. I usually canlaugh through thing's. I just can't now and it's so annoying.

Feb 21, 2016 10:50 PM

I'm sorry u have that to deal with seems like ur partner should go with u to a drs appointment so he can hesr first hand how ur Conditions hurt your body. U should never be good to shut at all for no reason it's not acceptable. I don't give advice on relationship but u shouksd have a real conversation with him as stress like that only hurts ur body

Feb 21, 2016 11:14 PM

Risa- welcome to the group! I totally get you! My husband doesn't verbally assault me, however his actions & passive aggression - hurt. I asked him to come with me to my pain management Doctor, the other day. Thank goodness this doctor is strictly only going to ask questions, type and type some more, then give her instructions & it's done. He tried to bring up things that belong in a conversation for other specialty doctors... She wasn't even going to entertain him with a response. I'm not gonna lie, I smirked on the inside. At the end of the appt. she specifically stated that she was prescribing me with OxyContin to be taken 2x a day - exactly 12 hours apart. She read my ailments & the cause/effect of my diseases/conditions. She specifically told me (usπŸ˜‰) when I will feel worse & what my husband can do to help me! I was pleasantly shocked! I had also just given my husband, the letter that I got from here about me & my diseases/conditions. Since those two experiences for him, he is changing his view about me. I know that God has a sense of humor, because he NEVER gets sick. Currently, he has the flu. He's complaining about all his joints hurting, his eyes feel like they are on fire, his chest is too, his muscles are so tight, his skin hurts. I told him I completely understood, & totally relate to all of that- every single day of my life. Then I asked him if he needed anything & he said yes please - please forgive me.
I don't know where or who I got the link for the letter to our loved ones, but hopefully they read this and post it for you! ((((Soft hugs)))) πŸ™πŸΌπŸ’—

Feb 21, 2016 11:17 PM

Oh! From what you said, it doesn't sound like you are selfish to me.

Feb 21, 2016 11:45 PM

When he's got a cold he's dying, he moans about his back and that it hurts. I do tell him welcome to my world. Then I get told he's in more pain, and I don't know how it feels. I guess my nan was right men are big baby asses. I just learn to go yes babe of course it's worse. So now I don't say anything about my health and I don't do or say anything about his.

Feb 21, 2016 11:49 PM

πŸ˜•πŸ˜±I am so sorry. I hope you get to feeling better asap! At least we have this forum to help us & give us a place to feel lifted up & supported.

Feb 22, 2016 8:27 AM

Risa, welcome to our pain family community! I am so very sorry you hurt and don't have the support you need from your partner. Unfortunately that happens to most of us at one time or another. I did exactly what Autoimmunerrrrr did, taking my hubby to my rheumy doc appt. He said something about being glad when I could stop taking my meds, and she politely but firmly explained my conditions and that it's a lifetime normal for me from here on. He changed overnight and is now my biggest support. Woo hoo for me & Autoimmunerrrrr, & others lucky enough to gain support! I posted the link of the letter to the normals above, and it is very good. There's also a story about the "Spoon Theory," that is very helpful.

I have multiple chronic pain conditions (DDD, TMJ, OA, migraines), starting over 25 the ago, but in the past 8-9 yr my health took a ourselves, from fibro, major complicated surgery that's caused other pain issues that will be ever present, sjogrens, hypothyroidism, and memory load/dementia. Until someone goes through such drastic sudden changes to their body and lifestyle, it's hard for them to understand where we are coming from with our pain. You will have depression & anxiety, and it's normal. You will need to go through multiple states of grief for the loss of your old healthy life a and come to acceptance that this is your new life. It will be up to you to decide if you let it defeat you. Or you can listen to your body and through learning to pace your activities, you can learn to still have enjoyable times in your life. It won't be easy or fast to get to that acceptance stage (out old lives are dead for many of us). It took me 4+ years. You will need a good team of docs; rheumy or Ortho, pain specialist, counselor or psych (to help learn to cope), and PCP, maybe more if new conditions hit you.

I wish well as you listen to various others advice and suggestions, as you find what methods work best for you, and as you get the support & treatments to help you have the best new normal life possible. Hugs, love, & prayers! πŸ™‚πŸ’•πŸ™πŸŒΌ

Feb 22, 2016 10:42 AM

Risa, It was distressing to hear your story. No one should have to put up with that. But the sad truth is that many people in relationships do. We end up with ones for better or for worse and sometimes we get the worse on some subjects. I am sorry that he is not very empathetic. I don't know how hard you have tried to illicit his empathy but sometimes we need to give it a nudge. We have to remember that the empathy that we want is based on imagination. The person we love needs to be able to imagine what it is like to be in our shoes. So what I was wondering is instead of saying that you are not feeling good, things like that. Have you specifically told him the toll that this disease is taking on your body. The pains and the aches that you are feeling and the limitations that it is causing you. Have you told him the things that you have missed being able to do because you are not being able to do them anymore. Have you expressed to him how his behavior has caused you much hurt and saddens you. How it makes you feel worthless at times. You have to make him imagine everything that is possible he can imagine about your condition and how it affects you. In this way, he can show empathy and compassion. Empathy is based on knowledge. If we don't communicate, it can never be achieved. Sometimes we hope that our significant other will just know that we need them and be there to offer empathy, compassion and understanding. The truth is most men are dense when it comes to these things. They need a lot of help. Unless a man is tapped into the emotional side of his brain and is sensitive, he really does need assistance in giving you the compassion that you need. Or unless a man is really into making sure his companion is really happy, he won't notice. He too would need help. I am just offering you some perspective if you have not tried these things.

I am really sorry that you are going through these things. No one deserves that. You have been through a lot and deserve compassion. I think getting an animal is a good idea. It would be nice to have a companion. Something to share some thoughts with and talk to. Something to be comforted by because you might not get out. I would really like you. I don't get out of the house except for twice a month. Usually a doctor appointment and a shopping day. I have social anxieties from being trapped at home all these years with my various health problems. So having a pet would be great for me. But my wife says she is allergic which is code for I don't like or want an animal. Whenever she says she is allergic it really means she doesn't like it because to date, I have seen her eat things that she says she is allergic to or be around things she is allergic to without reactions. She just doesn't like them. Ha ha. I give you my best wishes Risa that you will one day get the support you need out of the relationship you have now. But know for sure you will get good support here for telling us things you want to say out loud and getting good feedback. We will be mad, sad, and happy with you. But in the end, we will always try to bring you mood up. Best wishes to you

Feb 22, 2016 10:44 AM

Autoimmune, I loved hearing about your story with you and your husband. How he would give you a hard time and then you went to the doctors and how he did not appreciate the pain you were in. It really got me when he got sick and asked for your forgiveness. That sounded like it should be an article in some magazine. Thanks for sharing.

Feb 22, 2016 1:51 PM

Hi Risa, thanks for sharing your story. The others are right, you need support from your partner, but I think unless someone has experienced pain, no one understands it. Maybe you could go all 'misery' on him and break his legs whilst he is snoring! πŸ˜‚πŸ˜‚ joke!!! Anyway, back to your question about pets. When I met my husband, I also took on his 2 cockatiels...crikey, talk about work!!! They are very messy little things. I never hoovered up as much in my life! What about a cat? They just come and go as they please and they are far more cuddly than birds. I'm not a cat person myself, I have a dog, but I hear what you are saying about the walking. I took him out the other day and after half a mile, I was tempted to ring mountain rescue to help me back home. (I wasn't even up a mountain, just in the park over the road!) keep your chin up xx

Feb 24, 2016 4:36 AM

Thank you all for your support and story's.πŸ™‹ It is good to know that I'm not the only one , I'm not that good at talking to people or putting my emotions out there to my partner πŸ™Š I'm getting help with past issues, so that should help. I think part of the reason i don't say anything is that I get angry and frustrated with myself, I can't do thing's I like. I used to love going out walking, cycling,and gym. I can't do it now, and ifi do push myself, work through the pain and no pain no gain is what I hear alot. I can't do anything for days afterwards. All I want than is my duvet and teddy 🐻, I know I got to adapt but every time I do I seem to get diagnosed with something else. Gilbert syndrome makes me tired. I can't handle living with me, how can anyone then. I think I will get a bird🐦 I can't have a cat or dog. I'm going goad cuddle up with my Ted 🐻. I can't cuddle my partner as my body feels to sensitive and hurts if he touches me. Thank you again for your support and story's πŸ’ž

Feb 24, 2016 9:19 AM

I totally understand Risa! Just a thought - instead of a living pet - what about a HUGE stuffed one? I have a really big bear 🐻 that I got at Walmart. So soft, & cuddly! πŸ’— my daughter has a Huge Unicorn! πŸ¦„

Feb 24, 2016 10:42 AM

Welcome Risa! And thank you to everyone for being so transparent and sharing. I am blessed everyday I spend time here.

Feb 24, 2016 10:45 AM

Oh! At one time I thought about a monkey. Do you know you can get a service monkey if you are home bound?

Feb 24, 2016 6:43 PM

I saw a pet monkey throw poop at its owner when I was a little girl... I'll pass on monkeys! Lol πŸ™‚πŸ’•πŸ™πŸŒΌ

Feb 24, 2016 7:35 PM

I love all animals, always have. I get on with them better then humans. They love you unconditionally. I would love a huge Ted🐻!!! My flare up is still ongoing, so I would really love one at this time. I got a doll that my nan got me when I was 1, πŸ‘Άshes called Annie bell.

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