Forums


General Discussion

Pain and RA

    • By rp009

      Hi, my name is Roxy & I’m new to this site. I was diagnosed 20+
      years ago with RA and have been on numerous medications. Currently
      I am on sulfasalizine, Motrin, and take prednisone & Percocet for flare ups. I also have fibromyalgia. With the new pain medication regulations in California, my doctor said I have to now see a pain management MD
      I saw one yesterday. He seems knowledgeable & nice, BUT I felt like I was a number and not a patient. I gave him 30+ pages of health, medications, stays, MRI’s and lab tests. He hurried through a blanket statement of how dangerous narcotics are but stated I do not have an addiction problem as I take the narcotics only when I have pain, which is not daily or even weekly & he said I use a very low amount BUT, basically said that I need to be on suboxone, not percocet, and I have heard such bad things about suboxone I am so scared to take it. I feel like if the program I’ve been on for 20 yrs works why risk having the horrible side effects that this suboxone has, once you start it & even worse, you can’t just stop it like I can Percocet? I’m scared. Does anyone have a doctor that treats you, and not the system he is forced to believe in? Please help in California, Thank you

      Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      Roxy, thank you for reaching out to our community!

      I am so sorry you are not fully comfortable with your physician. If you are not sure about taking this new medication it’s important you speak to him about your concerns. You might find this article on how to start a conversation with your physician helpful: https://copd.net/living/tips-for-improving-communication-with-physician/.

      I hope he listens and takes your thoughts into consideration. All the best, and please feel free to reach out again!

      ~Monica (RheumatoidArthritis.net Team Member)

      Reply Created with Sketch. reply
    • By annlogan

      Roxy, I’ve been in a similar situation before. I had a rhumetologist a few years back that i felt was just rushing me through a deli line. Very nice tone when talking to me but it seemed like he would zone out and whatever I said didnt even register. He gave me different combination of therapies whihc never seemed to work for me and instead of listening to me, hed just change it to something else. Long story short I didn’t put up with it and neither should you. Theres plenty of good doctors out there who will listen and try to understand your specific situation, find one of them!

      You have a right to better, dont settle for less!

      Reply Created with Sketch. reply
  • By trebleinthekchn

    Here’s my list of simple swaps to make daily life easier.
    – ordering groceries online to be delivered
    – getting my hair washed/styled when having joint pain
    – asking a family member to assist with daily chores
    – establish “quiet hours” to reflect and recharge
    – use voice memo on iPhone to journal thoughts/feelings
    – check in with rheumatologist
    – a warm bath or shower to loosen joints

    Reply Created with Sketch. reply
    • By Richard Faust Moderator

      Sorry to hear you are still experiencing pain and stiffness Katie. For your protection, we cannot give medical advice over the internet. Control can mean different things for different people. Your doctor may be referring to test result numbers. In addition, damage already done can continue to create pain and stiffness, even if no additional damage is being done. Remember that if you feel your RA is not controlled, you are always entitled to a second opinion. No one will look out for you like you. Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

      Reply Created with Sketch. reply
    • By Larry Sawyer

      Katie, you have collateral damage from the RA. and under control does not mean the damage goes away. I use a mild time release nsaid like Celebrex to keep me going Also find a compounding pharmacist and have them make up a topical pain reliever which is Diclofenac 5% Lipoderm for hands fingers toes elbows tendons that can be gotten to. I have compounds made in 3, 5 and 10 percent. and use a higher dose when needed this compounded product is a stronger Voltaren and requires a prescription
      Larry

      Reply Created with Sketch. reply
    • By pstephan

      I know I’m a little late on the reply – have you asked your rheumatologist about Voltaren gel? It’s been a lifesaver for me, especially at night.

      Reply Created with Sketch. reply
  • By akshayv

    Hello it would be really good to hear some advice and talk to people who understand how it feels. I had recently been diagnosed with RA. I was on hydroxychlorquine but been recommended to be on Methotrexate. I had pain in my feet everyday with the mornings being the worse. but when I am wearing orthofeet’s shoes, at that time I dont have pain in my feet.

    https://www.orthofeet.com

    Reply Created with Sketch. reply
    • By LindaE

      I was recently diagnosis also and am on hydroxychloroquine. I too have much more pain than I think I should. My doc said it would take 3 months for the meds to even start working and 6 months before they would fully kick in.

      Between the pain and fatigue it is really hard to stay positive. I have started doing some exercises — worked my way up to 10 minutes on my stationary bike — but it is very hard and I still am very fatigue

      Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      LindaE,

      Thank you so much for sharing and reaching out to this community. I am sorry you are still feeling so uncomfortable. It’s very important that if you have any concerns or questions you talk to your physician. I still remember how confused I was at the beginning and struggled with what questions I should ask my him.

      This is a great article with tips on how to open a dialogue with your doctor: https://copd.net/living/tips-for-improving-communication-with-physician/

      I completely hear you on fatigue. It’s the one symptom for me that controls everything I do but is so difficult to shake. This article on the different kinds of fatigue is very interesting: https://rheumatoidarthritis.net/symptoms/fatigue-and-weakness/ and this one is a great resource for tips on how to manage fatigue: https://rheumatoidarthritis.net/infographic/strategies-dealing-ra-fatigue/

      I really hope you feel better and please update us on how you are feeling.

      All the best, Monica (RheumatoidArthritis.net Team Member)

      Reply Created with Sketch. reply
  • By Richard Faust Moderator

    Hi akshayv. Glad you have found something that is helping your feet. You mention that your doctor has recommended methotrexate. This article from our editorial team takes a look at methotrexate, with info on how it works and side effects: https://rheumatoidarthritis.net/treatment/methotrexate/. Also, thought you might be interested in this recent article from one of our contributors on how methotrexate may be under utilized as an RA treatment: https://rheumatoidarthritis.net/living/methotrexate-under-utilized/. Hope this information is useful. Keep us posted on your decision and how you are doing. Best, Richard (RheumatoidArthritis.net Team)

    Reply Created with Sketch. reply
  • By MaxDrave

    Myself I have bad feet with RA … Personally I wear original style Crocs 98% of the time… Not cheap imitations which are as hard as nails, but the real thing.

    They may not be the height of sartorial elegance nor fashion chic….. but they are comfortable I find.

    Reply Created with Sketch. reply
  • By tckrd

    Besides the triple therapy and biologics I use copper hands gloves throughout the day. When the pain gets really bad I use wrist splints. For ankles and feet I also have copper infused compression socks and ankle splints. Braces for knees and tennis elbow straps really help my elbows. Heating pads, warm running water and just standing under a hot shower for 10-15 minutes.

    Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      tckrd, I’m glad to hear you have some options in helping pain management. I have started to hear more and more about copper to help with pain. I think I might research it more! Thanks!

      I am also a firm believer in heat. I use it daily even if I’m not in a great deal of pain.

      All the best and good luck!
      ~Monica

      Reply Created with Sketch. reply
  • By frostli

    Paraffin wax dips for hands and feet.

    Epson salt baths with 4-5 cups of salt.

    Golden milk with saffron, pepper, turmeric, honey and cardamom (drinking this was the first time I was pain free in years)

    Tibetan/Ayuvedic diet for RA

    Reply Created with Sketch. reply
  • By frostli

    There is an old scientific research study on Paraffin therapy that shows it can successfully
    decrease the Rheumatoid factors.

    There is a similar modality in India where they do a light pounding of all the joints with a hot dry herbal fomentation.

    A modern modality that can work on all the joints would be great.

    The paraffin is difficult to impossible to apply to the major joints or neck…

    Reply Created with Sketch. reply
  • By frostli

    Really to answer your question… my rheumy did ok (moved and waiting for a new one). I chose to do Tibetan diet and herbs under a Tibetan doctor in Boulder. And have her supervise the progress. So she agreed. I did it for 6 months and then we checked labs again. All my lab tests were normal with no more disease markers (and have been for 5 years on Tibetan program with Ayuvedic supplementation) except for 2 vitamin deficiencies, one due to the diet. (both are corrected now with supplements). In Ayuvedic&TIbetan medicine this disease is curable if caught early with diet and herbs but if damage has been done to the joints it is not reversible.

    Allopathic drs imo are much more attached to their system and knowledge… and in a McDonalds like treatment system of handing out drugs like candy on halloween, esp. with the elderly… frustrating but like all things it will change eventually.

    I hope you have better days, and as one of my fav doctors in India always said ‘take rest’.

    Reply Created with Sketch. reply
  • By 1189wup

    I read an article that moderate to sever RA is more painful than most cancers. They throw daladid and morphine at cancer patients, but do not take our pain, seriously. RA loves company, so now I have Neuropathy, (liveable), Mild COPD, 2 fibrosis in my lungs, (scarring, tiny bumbs). The tingling and numbness in your hands and feet, that I see so many people talk about is Neuropathy. I open and close my hands, intertwine them and open and close them. As for pain, I broke 10 bones in June and the hospital and trauma center, gave me daladid. It was amazing not to be in the pain I am in, every day. Yes I got euphoric for 45 minutes, or so, but the pain relief lasted all day and I felt normal, (not high, at all). I get nothing for pain. my last number was 45. I take a lot of over the counter supplements and they have made me feel a little better. The best one results was my stomach felt like I was getting stabbed and was sick every morning for around 4 hours. My intestines kept up with my stomach and felt like someone was trying to tie them in knots. My pharmacist recommended Florajen3, (must be refrigerated). In 3 days all pain and sickness was gone and I was regular. He said because of our compromised immune system, the preservatives and some of the chemicals in our food can’t be digested, easily and clust
    er up.

    Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      1189wup, it’s amazing that there is still a stigma against autoimmune conditions. If we don’t see it, it simply can’t exist, right?

      I am so happy that you have found something that works for you! I hope it continues to, as well.

      All the best,
      Monica (RheumatoidArthritis.net Team Member)

      Reply Created with Sketch. reply
  • By kpal

    Good morning I have had RA since I was 12 years old , 2 hand surgery’s at 14 , many knee drains , I have been on so many medications over all these years , currently I am on enbrel and plaquinol , I see a chiropractor a few times a week and I feel so much better , I am a busy mother of 3 younger children , very busy , and 3 months ago I broke my leg, I am finally doing better with that , however I am flaring up a lot on my hips low back and knees , having RA for 34 years I can see I am slowing down , usually I feel pretty decent , well pain every day , but I guess you get used to it ,I try to keep my weight down , and eat well . Some days I get depressed living with a chronic illness, but I try to be positive, I have been seeing the same rheumatologist for 15 years , I was wondering what other meds people are taking who have had RA for most of their life, I have tried to get off enbrel and go naturally with supplements, eating healthy being gluten free, taking tumeric etc…but in the end I flare so so much I can’t walk , shower myself etc… I have RA in every joint , I hate the side effects of the medication I’m just not sure what to do any more ? Any suggestions or stories of succes would be appreciated:)

    Reply Created with Sketch. reply
  • By DanTen

    Massage is what really helps me. And it should not be rude. I think you all know how some osteopaths do it… That’s not this way. It should be a moderate pressure massage.
    Once I had a vacation in Thailand (so long time ago…). My wife had a terrible massage right at the hotel. Then we visited a specialized salon in Pattaya. Just once. It was unforgettable, real cosmos! After many years, I’m going back to Pattaya. Now I will visit my masseur every day.
    As far as I know there was a research back in 2012-2013 that proved massage effectiveness officially.

    Reply Created with Sketch. reply
    • By Monica Y. Sengupta Moderator

      Thank you for sharing, DanTen! I have thought about trying massage but I am afraid how my joints would react!

      I am very glad you’ve found something that works for you.

      Best, Monica (RheumatoidArthritis.net Team)

      Reply Created with Sketch. reply
    • By DanTen

      I guess it could be the result of numerous factors: not just massage, but lots of fresh fruits, sea air, no stress, etc. So, try it like like this first 🙂

      Reply Created with Sketch. reply
  • By Lindsey22

    My name is lindsey im 22 and i been diagnosed with ra not to long ago. But ive had it for about 5 years no matter what medication it seems as if nothing helps. Now i am experiencing bad nerve pain in my left foot everytime i step or put pressure. Its always my big toe and then goes to the center top of my foot. Does anyone else experience this. What do i do to relieve this pain. Medicine. Just doesnt seem to help. Been prescribed prednisone. .

    Reply Created with Sketch. reply
  • By akshayv

    I have had plantar fasciitis for a year+ and found that these slippers make walking less painful. I also believe that by ordering a new pair as soon as I see “wear” that they are helping me to get to my goal of a pain free walk. I have ordered an orthofeet slipper(same one) three different times now.

    Reply Created with Sketch. reply
  • By supernatural101

    Hey guys I’m 32 I was diagnosed at 12 I’ve had multiple wrist surgeries and have tried many diff meds right now I’m on rituxin I just had my second treatment it seems to be helping ideally it’s ment to put me in remission but as of right now I still struggle I use pain medication daily just to get out of bed the ra affects my entire body but I stay positive swimming helps me a lot I’m greatful to have a lot of help and support from my family

    Reply Created with Sketch. reply
    • By CaseyH Moderator

      Hi johnsonjeff428, welcome to our community! We’re glad you’ve found us! Glad to hear that swimming has be so relieving for you. That’s awesome! I’m not sure what orbbi is, care to elaborate for other members? -Casey, RheumatoidArthritis.net Team

      Reply Created with Sketch. reply
  • By Mike233

    Just stay low key.. You will feel pain but don’t go to pain killers straight away. I would recommend you to wear a brace as well because it will help you.
    Moreover, take great care of your diet. Don’t intake oily and fatty stuff.
    If you want to check about braces then you buy from https://www.bracesbox.com

    Reply Created with Sketch. reply