Hello! I'm so glad to have an outlet here with others who know where I'm coming from and who know what I'm going through!
I am 35 years old and my parents knew something was wrong with me when I was 18 months old but wasn't diagnosed (with RA) until I was 5 years old. When I was pregnant with my first child, the RA disappeared! Then about 2 weeks after she was born, the RA exploded! At first the RA was just in my left knee, then after my daughter was born it went to every joint that I have except my neck and spine. I was so badly swollen all over that when my hubby left for work, he carried me and the new baby and everything we needed for the day downstairs since I could not go up or down them. I was 21 years old. I have been on everything there is except the infusions (I'm approaching those fast). Now I have 4 kids (14 yr old daughter, 8 yr old twins - one of each - and 6 yr old son) and my RA is out of control.
I have an amazing Rheumy!! He's been fantastic for the past 14 years. Currently I am taking Humira once a week and 15 mg of Methotrexate. We just upped the dose of Meth (I call it that too Melissa) about 3 weeks ago. I'm in so much pain I can hardly stand it! Tylenol, Ibuprophen, and Alieve don't even touch the pain. I have taken Vicadin and absolutly LOVE it. It has been the only thing that has helped with the pain (took tramadol and had an allergic reaction). So I'm afraid to ask for more because I liked it so well. I'm lucky enough to be able to stay home and not have to work outside the home.
My hubby and I go rounds with the pain issue. He doesn't seem to understand that there aren't any over the counter products that will help with the pain and he gets mad at me for not calling my Rheumy to ask for more Vicadin. I can easily see myself getting addicted on the Vicadin so I really don't want to ask for more! I'm not sure what to do. How do you handle the pain? I'd love any help in that area!! It looks like I'll be switching to an infusion drug in January - which is my next appointment. Any suggestions with that too?
I am looking forward to having a place that I can go with others who understand!!
Celena
Hi Celena -
I think people with chronic pain don't get 'addicted' like oh, regular drug users. I'm sure other people will jump in here with suggestions. I know there are other options for pain control and there have been posts about pain clinics and the patch etc.
Were you ever on antibiotics for your RA?
Welcome!
Pip
Hi PipWelcome Celena!! I think I would talk to your doctor about pain managment if I were you. I think their are alternatives to narcotics and OTC meds.
Anyway, I'm glad you found us here. There are a few others who have been dealing with RA since they were young. Tough road. I bet they can offer you some good advice. Looking forward to getting to know you
Linda
Hi Celena, pretty name, glad you found us and I hope you find some help as you can't continue with that pain!! I tried all the pain meds you mentioned and until the RA meds (prednisone helped me but I had to get off of it!!, just now is my face back to 'normal' not puffy and fat!!)
I did get relief with oxycondone, but it is scary stuff.
Good luck with this and I hope you can try Remicade, as it has really helped me a lot!! Once every 4 weeks!, going this friday, can't wait!!
Lynda,
Please feel free to jump into the chat thread and chat us up!
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Hi Celena and welcome to the board!! Hopefully I can answer some of the questions you have about the pain killer issue you are having. Like Pip said...you really do not get addicted to the pain meds like someone who is using them for "fun". As long as you take your pain meds as instructed by your doctor, the chances are very low that you will become addicted. It does happen, but it is very rare with chronic pain sufferers like us. That "high" feeling you get from taking pain killers...goes away after about 1-2 weeks of taking them. Sometimes...what happens...is that your RA makes a change and the current pain killers you are on stop working well because your pain level changed. Then you might start taking more and more of the pain killer and that is when addiction can start to happen. All that needs to be done to resolve that is a change in pain meds. And believe me...several of us here have been thru many pain med changes lol. I am doing one right now lol. It can take time to find out what works best for someone. There are many options out there for pain control. It sounds like you have an awesome RD and I'm sure that he will help you find what is right for you. I have a daughter that is 12 with JRA so I might be asking you some questions so that I can help her out and help her deal with all of this!!! My RA was adult onset (diagnosed one year after I got married so it has been 15 years) and it is just so different with these poor babies that have it. Look forward to hearing more from you! Hi Celena, I would also like to welcome you! I'm sorry you have RA, but glad you have found us. There are many wonderful people here and you'll find that everyone tries to help one another if we can. I'm sure you know that this is a very individual disease. It seems that no two people have the same symptoms. There are also many treatments. Sometimes, you must go through more that one to find the one that works for you. It sounds like you have a wonderful doctor. He has seen you go through the different stages. If your pain is not being controlled with your current treatment, you should let your doctor know. I completely agree with Grammaskittles about the pain meds. I know some of our members may not agree, but sometimes there is nothing else that will control your pain. If necessary, your rheumy can refer you to a pain specialist, who can work with you to find the best pain med or combination of meds, to ease your pain. I have OA and serious spine problems in addition to RA. In fact, my RA doesn't even show up in my joints. But they are being destroyed, by OA. I would be completely bed-ridden without something to control my pain. Pain meds don't make you pain-free, but they can make it easier to live with. I hope you will talk to your doctor, or ask to see a pain specialist, if he thinks it could help you. You are young and have young children, and you shouldn't have to live with the pain, without some help. Many people are afraid of addiction, but as Gramma said, with chronic pain, that rarely happens. In fact, if I could, I would get rid of all my pills. But my life would have little quality without pain treatment. Please let us know how you are doing! We are always here if you need to talk. Gentle hugs, Nini I am so very glad you are getting something for the pain! I hope the Vicodin continues to help you. It is not as strong as the opiods, so if it ever stops helping like it should, remember there are many others out there. The pain specialist will go over all that with you, I'm sure. I really am glad you have been referred to the pain spec.! A good one, who understands you and communicates with you, is such an asset. I was afraid to go to one at first, but just be honest about your pain and they can really help. By that, I mean don't try to be strong and hold back telling him just how bad your pain is. Sometimes we tend to do that because we don't want to look like complainers
Good luck, and please let us know how you are doing! Gentle hugs, Nini
Good info on the pain meds! Seems like every 4-5 years my RA decides to change and back to the drawing board we go. I'm not that old but the older I'm getting the more I'd like to not put up with this disease. This is a bad day for me so I'm having a very difficult time being positive about RA. I am thankful (most days) to have this disease than the many others that are far worse! I also feel lucky (for lack of a better word) to have gotten this disease at such a young age. I don't remember being "normal" and I think that helps.
I am very sad to hear that your daughter has RA. Like I said, I was very young when I was diagnosed and there really weren't any treatments for it. The doctors wanted to put me on 8 adult asprins a day and thankfully my parents said no way! The doctors said they had no idea the side effects it would have on me. I'm very grateful my parents chose not to agree to the asprin. I tend to shield my parents on how terrible I'm really doing. I know it is extremely difficult for my mom to see me hurting, somehow she blames herself. There is no history of this disease being in my family, so she feels like it is something she did when I was young that caused this. I've told her that it isn't her fault, but you know trying to tell your parents something is harder than trying to tell your child something.
Thank you all for welcoming me! This will be such a great outlet for me!
Hi Celena...welcome!
I have asked for more vicadin and it is sitting at the pharmacy as we speak. And I made an appointment to see a pain specialtist too, but have to wait until mid november for that one. I'm sure it'll be worth the wait!
So sorry to hear how bad off you are Nini, and with so many others here. Makes me feel better knowing I'm not alone.
You can expect to find me here a lot!!!
Glad to know I'm not the only one with a goofy hubby too!
Hi Celena! Now i see where you introduced yourself
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