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CatchMyPain Community and Pain Diary App to manage chronic illness

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Jul 15, 2016 9:53 PM

I have RA and AS. Which sucks. It's got me outside RA to inside SA. My pain is not controlled at all. I went to John Hopkins for a second opinion and found out about anklyosing spondolyitis. My brother died from AS complications. He did not take care of himself and I do a much better job other than smoking. I now have to quit smoking. Yuck!!

Jul 16, 2016 5:28 AM

Hi missi ๐ŸŒป

Welcome to the community hunni ๐Ÿค” i hope u can gain some support here... and the pain diary is an excellent tool to show ur specialist!

There are several threads going on atm to read up on, ๐Ÿค“ and gain some ideas and insight into how we all cope in differing ways. ๐Ÿช

Everyone is different...๐Ÿค” so the answers are never the same... but there are many of us here with the same or similar dx's... so welcome... u can say anything here... u r amongst friends ๐Ÿค—

Jul 17, 2016 12:30 PM

Hi Missingmylife, I wish I could help you to feel better. Know that you are not alone. If you need to stop smoking, you can always vape. You can get a very decent atomizer and mod kit at a good price and buy the e-juice with however many mg of nicotine you want and then wean it down as you go along. The vaping doesn't have all the chemicals of tobacco such as formaldehyde and other carcinogens. You should be able to do just fine. Let me know how it goes. As far as the RA and SA, I'm sorry for your pain. I have several autoimmune issues that cause me to have chronic pain and it's horrible. Welcome aboard and I hope that you find the support and information you need to help you get through the daily struggle. {{{Hugs}}}๐Ÿ’•๐Ÿ™๐Ÿป๐ŸŒป๐Ÿ˜Š

Jul 18, 2016 8:07 PM

Welcome to our community family Missingmylife! I'm sorry to hear about your brother. It's good you take care of yourself as much as possible. If we don't, no one else will. My sister has RA, as did my mom & grandma. And a friend has AS. Her hubby says she's starting to have better days than this time 2 years ago, but her bad days are also worse.

We all have varying chronic pain conditions, and everyone has some useful suggestions here and there. I have fibro, sjogrens, hypothyroidismsm, OA, DDD, and many other chronic illnesses. I think the fibro, sjogrens, & spine issues have been the most life altering, besides the surgery in 2010. The spine issues I've had since the 90's, but the rest came on from 2007 forward. It took me until 2014 to come to the point of acceptance, that my old life was gone and I had to make the best of my new life that I can. It's different for everyone, but it's very similar to grieving the loss of a loved one, grieving the loss of our old lives, our healthy bodies. Learning to listen to your body's signals of when to rest and what to do or not do is important.

I can't take most pain meds due to medication allergies. I have Tylenol arthritis for daily pain, and tramadol on bad days, along with a muscle relaxer, migraine meds, voltaren gel, antidepressant, & anxiety med. My avg daily pain is 3_4 since starting the plaquenil for sjogrens; before that it was a 7-8. The plaquenil was a blessing for me! But I've began taking magnesium and vitamin D3 supplements, and doing relaxation & mild exercises (treadmill walk & stretches). It takes time to figure out if something helped or not. Exercise actually does help, but on days like today it's very hard to even get motivated. I'm forwarding with exhaustion & pain.

Like Lulabel suggested, read through old posts. You can search for specific words/topics with the spyglass. Just know that you're never alone. There's usually always someone online here. Hugs & prayers as you find your best coping methods to help relieve pain and deal with these chronic issues! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Jun 17, 2018 9:35 PM

Hi welcome to our group. We all have many diagnosis but one common thread โ€œchronic pain.โ€ We are all here for you. I to have RA and AS as well as Spinal Stenosis, Psoriasis , hypothyroidism, and Parkinsonism. Other diagnosis to. Like FlappysLady Iโ€™m on many meds but the ones I have found to be the most helpful to me are: Plaquinil, Gabapentin, Azathiorprine, and many supplements especially vitamin D and B12. Itโ€™s a difficult condition to bear ( RA and AS). Are you seeing a Rheumatologist? The pain you are having is it nerve pain, muscle cramps or other type of pain? My pain was out of control until my Rheumatologist increased my Gabapentin from 1200 to 2400 mg per day. The azathiorprine is a immunosuppressant so if your having any issues with your immune system it helps. It effects cell division. My father also had it and died from his Stenosis and complications from Alzheimerโ€™s disease. I think we all sooner or later have to accept where we are with grace. Not that I like it...๐Ÿ”ฅNO but I used to go from Doctor to doctor hoping for a pill that would take it all away and finally had to come to the realization that there is no golden pill. If ever you need to talk to some one Iโ€™m there for you. We all are for that matter. We all genuinely understand what you feel because we live it every day. Iโ€™m hopeful the doctors at John Hopkins will help you. Take care๐ŸŒˆ

Jul 26, 2018 8:55 PM

Hi missingmylife! Welcome to our community! You will find a lot of support here! Feel free to ask the questions! Take care!

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