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  • Pain and RA

    What do you do to manage your RA pain and what can you share with others?

    Invisibility

    What invisible aspects of RA would you like others to know about?

    low dose naltrexone

    Is anyone else taking low dose naltrexone for their rheumatoid disease? I’ll keep this short because I’ve tried to post on this topic before and my post didn’t “take”, wasn’t accepted, or whatever.

    I have polymyalgic-onset severe systemic rheumatoid disease. In October last year, while titrating up the LDN, my Vectra score was 20 points into the High category. By Nov/Dec, I was at optimal (for me) dose, 2.5 mg. By April, my Vectra was one point above Moderate. I had basic blood tests in August. My sed rate has gone from 80’s & 90’s to high 20’s. My CRP went from high 20’s to 1.6. My anemia is gone. My fatigue has dialed way back. My range of motion is much better. My muscle-wasting stopped and my weight is holding. My cough stopped. My pain is approximately 20% of this time last year.

    Nine months into LDN, I thought I’d be dead, but I worked a decent field season, when last year, I couldn’t do field work at all. (I am a wildlife technician/biologist.) This despite shingles in April and heat triggering my MS/fibro a bit in August. I am not where I was two years ago, before the RD started, but I have my life back.

    Now let’s see if this post will “take.” I’ve been posting on HealthUnlocked, no problem. But here, apparently, I’m either posting incorrectly or I’m being blocked. Repeated searches of this web site still come up negative for naltrexone.

    Julie

    Rheumatoid Nodule Surgery Stories – Please Share

    Hi all, I’ve had RA for about 15 years now. Primarily in my feet. I’m just about in remission with all the rest of my joints, except for this … I have two painful nodules on my big left toe. I’m an avid hiker, biker and just all around active person and since I have to walk carefully because of my toe, I now have a knee injury. I don’t want the knee to get worse, but I also don’t want to have nodule surgery and then have it not work or have them come back. Does anyone have a nodule surgery experience they can share? Thank you in advance for your story! Cheers.

    Acupuncture and Chinese Herbs

    Hi, I saw in a recent article about what helps people with pain and someone mentioned Chinese herbs given to them by an acupuncturist. I am not sure if that person is still on the boards but if anyone has experience with this I am curious. I am getting acupuncture which does help and taking tons of supplements. I have changed my eating completely which also helps but continue to have episodes of traveling swelling and pain. It is not near as bad as two months ago and I have not taken Advil in a month. I was given some herbs but of course always worry about safety of any product. If anyone has any feedback or specific formulations (there are TONS of Chinese options) I would appreciate it. I am not on any DMARDS. My next step would be LDN if this doesn’t work. Thanks!

    Training for a big event

    Is there anyone else out there who is doing well with meds and exercise? I’m very grateful to be in “remission” now for 5 years (after 25 long painful years with many failed treatments). I’m currently training for a long-distance cycling event. I have no idea how far I’ll be able to go and how much I can push myself but if I don’t do this now, I might not have another chance because I can’t take remission for granted. I still have some pain from permanently damaged joints and fatigue which makes this a challenge. But I’ve lost so many years to RA and just want to do something “epic” once in my life.

    Medical Marijuana Cannabis

    Am desperate to find something that will arrest the onslaught of my Rheumatoid. Have been harmed by 2 medications and am sick of being sick.

    I read Medical Cannabis in the form of Sativex/Nabiximols is arresting Rheumatoid, MS and other auto immune diseases Osteoarthritis and Diabetes.

    It is legal in USA/Canada and hopefully soon Australia. Anyone trying it.

    bloodwork initially fine?

    I was evaluated for RA (and other autoimmune issues) in 2012. Everything came back fine at the time. I initially went to a rheumatologist due to late onset Raynaud’s, knowing that late onset RS is a red flag for other autoimmune problems.

    At the time the dr. told me I only had osteo arthritis in my toe, although I had no symptoms. Fast forward a few months and the toe became a huge issue. I now have shoe inserts.

    Fast forward a few more years and now I am dealing with multiple joint pains. At the moment, hip joint pain, worse in left. Knee pain, worse in left, and elbow pain, worse in right. Also have had what feels like sciatica in right leg for a year now.
    And fatigue, some days not so bad, others extreme.

    Went to a chiropractor who told me I have tennis elbow. Did regular xrays (knees, hips and elbow) which showed a narrowing of space in left knee only. Nothing big.

    So I have an appointment with rheumatologist again in a month.

    My question is……given the fact that my bloodwork was clear in 2012……am I wrong to suspect this is not an autoimmune issue? I’m thinking that since x-rays looked ok by chiro and bloodwork was good a few years ago, I most likely don’t have RA? Can bloodwork change that fast? Would RA show on regular x-ray?

    I am 51. Thin, healthy otherwise, and work out. I am having to severely cut what I do exercise wise because everything hurts.

    Not that I want RA…..but I’m beginning to feel a bit crazy. I have all these pains that no one can seem to find an answer for. I had a hysterectomy a year ago….maybe it’s just hormones? Although I am doing hrt, so you wouldn’t think so. I am at a loss and tired of feeling like crap.

    That was a lot longer than I intended! Hope someone has some insight. Thanks!

    Newly Diagnosed – AI Disease #3

    Hello, hello, hello! Well, where to start? 62 yrs old, tiny female. Dx’d with celiac disease in 2011. I have dermatitis herpetiformis aka the celiac rash which is the skin presentation of celiac disease. I also have been dx’d with Reynaud’s. Now I am newly dx’d with RA.
    This dx has gone pretty quickly for me. I pretty much figured out I had RA when I googled my symptoms & then I went to my PCP & described my symptoms to him. He ran serum. Ha! It’s kinda funny b/c I am sero negative on celiac (the rash is the key there) but I’m sure not sero negative on RA. My RA Factor is 132 with a ref. range of <14. CCP is >250 with ref. range being >59 as strong positive. ANA Screen is positive with ref. range as negative – you’re either positive or negative on that. ANA Pattern is speckled. ANA Titer is 1:40 which is high. After these results, my doc ordered some more labs. He wants to rule out Lupus & Mixed Connective Tissue Disease (MCTD). We are still waiting for the results on those.
    My doc also had me tested for TB in anticipation of putting me on meds for the RA where you have to make sure you don’t have TB before starting. He also ordered some X-Rays of my wrists, hands & knees. The good news is that we caught this early, very early from what I am reading from my research thus far. It seems only my left hand has permanent damage & that damage is very mild & basically confined to 1 joint on my middle finger. So all in all, at this point, I feel pretty lucky.
    Doc has prescribed 7.5 mg methotrexate orally once a week & 1 mg. folic acid daily. I have not started it yet as I have to send the script off & the meds get mailed to me so I am just waiting for them to arrive. I was totally freaked at 1st b/c the methotrexate is a chemo drug. YIKES!!! I’ve had a bit of time now to do further research into it as well as just let it sink in mentally. I certainly don’t need permanent damage & no one needs pain right? I’m going to have to give the RX a go. As it is, I’ve been living off of Advil to the tune of an average of 9 per day & still I have times of pain. It isn’t unbearable yet though & I’d love to keep it that way if possible. Doc did not go with prednisone b/c I am so small & can’t afford any bone loss. Suits me fine, b/c I have had steroids before in my life & I hate them! They make me bounce off the walls.
    The bottom of my feet are the worst I think. They feel swollen & painful every single morning. This has been going on for about 6 months now. It was intermittent in the beginning but for 3 or 4 months now, it’s every single morning. I think what really rang the bells for me was in August, I had what I now know was a flare. I felt like the rusty tin man who was in terrible need of some 3 in 1 oil. That was body wide & lasted around 6 weeks. It was painful & frustrating as hell.
    I did not mean to make such a long drawn out post but did want to introduce myself & give some background.
    I would love to hear from others who have been on methotrexate. What dose were you started on, was it increased, did you experience any side effects & if so what were they?
    Thanks for reading!

    How I'm trying cannabis for pain relief

    It’s been 2 1/2months since I received my medical marijuana card. I am utilizing this option for pain relief and have had some success. 20 years in to RA and I’ve tried almost everything else. I still take the big hitters to help stop disease’ progression, but I needed more pain relief. I take the CBD pill at night. It helps me sleep. That’s a big deal as I haven’t slept well in years. I’m wearing the THC-Sativa patch during the day. I wear 1/4 to 1/2 a patch a day. Together the two components help me with sleep, pain relief and mild mood enhancement. It takes a while to get in your system this way, but I feel like it’s penetrating down in my nervous system and blocking pain. I’ll keep at it to test it’s effectiveness over time.

    Concerned about mum

    Hi all, im new here but looking for some words of wisdom. My mum has has pain/swelling in her wrists, fingers, joints for a cpl of years. Doctors originally diagnosed fibromyalgia. At a recent app my mum now said they have told her she has some sort of inflamitory arthritis. She is due to start medication that will have strong side effects seemingly. I’m really worried about her, she is 4 foot 10 and approx 6 stone. She had anorexia as a teenager and her lack of eating has become worse recently. She appears to suffer depression and anxiety but won’t get help or admit this to anyone. She constantly suffers from cold, chest infections etc. I’m so worried but dont know how to help. She’s 64…. 😓

    Practical question:

    A big problem for me is that with my ongoing lack of strength and flexibility I’m having trouble cleaning my home. Right now the biggest challenge is the bathtub. Does anyone have suggestions on a product that I can simply spray on, wait a while and rinse off that actually does the job? Or another way to clean it that doesn’t require crouching down and scrubbing, both of which I can’t do anymore.
    Is there a place here where we can exchange helpful tips on working around or adapting to the challenge of RA when it comes to necessary chores? Thanks for reading.

    Fear of losing insurance (income-based medicaid) if I work

    I was diagnosed with RA a few years ago and have finally started biologics over the past year (after trying other, less effective meds first). I started on Enbrel and it helped a lot but wore off a few days between the next dose so I was only good for about half the week. So now I’m on Remicade which lasts longer (although this also starts to gradually wear off long before the next infusion, so I’m still up and down).
    Even though I am not even close to being at the activity level I used to be, these medicines have significantly reduced my pain and now I am able to at least do most normal daily activities and am able to babysit my grandson for a couple hours at a time. A year ago I would not have been able to do that, and was at a pain level that kept me from sleeping.

    I am on SSDI and have Medicare plus an income-based Medicaid program that covers deductibles, premiums and copays for the medications that I would otherwise not be able to afford. I know that there are many people on Medicare who cannot get biologics because they don;t qualify for the help. It is horrible that they fall through the cracks and that not everyone gets the “good” medicines.

    So here is my dilemma.
    I was already on SSDI for other conditions long before this RA diagnosis. Those health issues would come and go and various levels, like many illnesses do. There were times when I had part time jobs and other times when I would lose those jobs and then be unemployed for awhile until I recovered enough to try again.. and again.. etc.
    I’m sure you get the picture.
    For a long time I only had Medicare part A and went back and forth between being insured by the “Medicaid for Employed Adults with Disabilities” program during times I was working… and then being uninsured (except for part A which covers hospital only).
    So in those in between times I went to clinics with sliding scale fees, got cheap medications or relied on samples. Or just went without and did my best.
    “Obamacare” came along and that changed some things including Medicaid expansion. So I eventually got to a place when I could have ongoing reliable healthcare and medication coverage.

    Very long story cut shorter….
    I recently got a letter from Social Security saying I need to go back to work using the ticket to work program (which I am familiar with as I’ve used it before when I worked on and off in the past).
    It has been a few years since I’ve worked at all, because of the RA on top of everything else.
    They want me to either return to my work goals or I risk being evaluated by one of “their” doctors (not mine) to decide if I should still receive disability payments or not.

    Apparently this is happening more often lately and I wonder if it is just a coincidence or if it has to do with program cuts and the insistance that we need to “weed out the fakers” and make it more difficult to get (or keep) benefits.

    I am afraid of losing the assistance that helps me with the cost of medications and deductibles, copays, etc.
    Yes, I could keep Medicare … and also pay for the part B. I could also sign back up for the Medicaid for disabled program. Or find an employer willing to hire me for only a few hours a week so that I don’t go over the income limit for the program currently assisting me. The one that covers my biologics.

    So the catch-22 is that if I go back to earning even a small income, I could end up not being able to afford these medications. I would end up back on the ones that were way less effective… which means I would ultimately lose jobs again and keep repeating the same cycle.

    I have been through the horrid experience of being suddenly yanked off medications. And having insurance coverage change or ending up with gaps in it.
    That is a big reason why I had decided to just keep things the way they are. That is in addition to the fact that I am not anywhere near ready to go back to a job.
    I am just starting to catch up on about 2 years of housework and other projects that piled up during the time I could hardly move because the pain and fatigue was too intense. Even walking a short distance was agonizing. I used to stand on cushions to cook and wash dishes for a few minutes at a time before having to sit down again.
    Now I can (on most days) actually cook a meal or wash a sink of dishes without it totally wrecking me after. I can take a short walk. And for short amounts of time I can lift and carry my grandson! I can actually sleep most nights without crying in pain every time I try to roll over. It has been wonderful to get some of my life back.

    Going back on the pills/ meds that I tried for a couple of years before getting these biologics would mean losing the progress I’ve made. And right now there is nobody who can assure me that won;t happen. I have an appointment for orientation with Vocational Rehabilitation in a few weeks from now, but they can’t answer my questions in the meantime.
    Another issue that complicates things is that technically I’m not even on disability for RA. it is for other issues which, incidentally, have improved since I stopped working.

    This might sound paranoid but I am very worried that I will be one of the people who ends up kicked off disability if my number gets picked to be evaluated by a random doctor while I happen to be not in a bad flare. I have read too many accounts of people who sent in reams of paperwork from their regular doctors which state the level of impairment and explain why working is not good for that patient.. only for it to be ignored. My understanding is that this is not as simple as just getting a doctor’s note. If the doctor and/or lawyer (who are hired by the government to turn down as many applicants as possible) sees me and decides I’m fit to work then I will have a rough road ahead, to say the least.
    So my only option is to proceed with vocational rehab and probably end up back in a retail job if I can’t find a “desk job” (those are hard to find anymore) on the bus route or walking distance. I also don;t drive because of a brain injury. That limits the amount and types of jobs I can get to.

    I realize that all of these issues are very common and I know I’m far from being the only one. I wish that the people who don’t struggle with these things could understand, instead of helping to make cuts to programs that help. And those who want everyone to work yet could care less about whether or not they can afford healthcare.

    RA symptoms and side effects

    So, I am 49, i was diagnosed int 2009 with RA, but believe i have had it since childhood.
    This month has been especially trying as i have been hospitalized twice with major illnesses. At the beginning of the month i had double pneumonia and was in the hospital for 4 days. And was just released yesterday, from another week long stay for pericarditis which is a big word for fluid surrounding my heart.
    And it was a direct link to my RA. Infection was ruled out,So far anyway still have cultures pending. So to determine whether it was caused by inflammation or infection, they have to cut a hole in your chest and a tube to drain the fluid out to test it. A procedure that i could have died from! I already suffer from anxiety issues, and depression, and to have this diagnosis was a bit shocking to say the least. The initial reason i went to the hospital was because i was having pain in my neck, shoulder, back and chest, and i thought i was having a heart attack. I am way too young for this crap, and i am just wondering if anyone else has had similar symptoms or diagnosis. Also wondering when the heck i am going to stop having new symptoms that are so sever that they could kill me!!! Will i ever have control over my body again or is the RA going to dictate how i live my life and be the cause of my death!!! HELP!!!

    Xeljanx?

    Is anyone one Xelijanx. and if so how is it working for you? I got it prescribed, but I’m not ready to take it and I’ve been in pain lately.

    Orencia

    I have been on Orencia for three weeks now and it seems I’m in more pain now then ever. I’ve tried Humira, Enbrel and now this. The only thing that works for me is Prednisone but my doc won’t prescribe it, only for occasional flares. I’m at the point where I’m seriously considering quitting work because the pain is more than I can handle. Any tips, pointers etc?

    Rheumatoid Factor

    I haven’t been officially diagnosed by a Rheumatologist, my appt is next Tuesday. But, my Rheumatoid Factor was 280??? That sounds crazy high to me. Does the higher number mean that my RA is progressing faster?

    Fatigue

    My biggest issue lately is dealing with exhaustion. I’ve never felt such fatigue and I’m hoping someone has suggestions to help. Tired to the bone!!! I get very little accomplished and this creates such depression. I dread getting up every day.

    Diagnosed…but not officially

    Hello! I’m new on here and was recently told that on top of osteoarthritis I most likely have RA and possibly another auto immune disease. We recently lost health insurance so had to cancel my Rheumatologist appt to have it officially diagnosed or not.
    I’m 56 and have a back injury (herniated disks) from 30+ years ago pain is/has been daily for a long time. Approximately 6-7 years ago I was experiencing what I would call intense pain episodes with fatigue and depression. Normally my depression is just seasonal winter blues but this depression has not left me since then. My pain is daily and I am watching the joints in my fingers in both hands literally grow almost overnight and going into all fingers instead of what was only my pinkies. One pinky is frozen. My left thumb pain has become so painful that I can hardly grip a jar or door handle without horrible pain. My feet always hurt, and they have been this way for years. I have hip pain that is worse on the left side… In fact most of my intense pain is mostly on my left side though I do have pain in the same joints on the right side.
    I did see a rheumy about 15 years ago about my pain (maybe that was another flare up?) but she said it was osteoarthritis and not fibro or RA. She did take X-rays of my hands and run blood tests but never explained to me what she was looking for.
    Finally in January this year I had to do something,I just couldn’t live with this daily pain any longer so I made another doctor appt. She ran a number of tests and they showed elevated RF result though its not significantly higher than the high normal range… Only above normal by a few. Everything else was normal with the exception of high cholesterol and slightly high blood sugar ( 1pt above normal). The rheumatologist appt was to confirm and probably run further tests.
    My doctor started me out on 50mg diclofenac twice a day along with prilosec. I don’t take it most days. It helped for the first two weeks but then it just didn’t feel like it was helping as much so now I only take it as needed.
    I guess what I’m wondering is could this really be RA with such a low elevated RF? Does such a low number mean mine is just in the early stages?
    I would like to know how others were feeling in the early stages and how quickly did it progress? What does the fatigue feel like? I’m just questioning if I’m tired enough to feel that this is RA lol. For instance I have days that I can get stuff done (I am caretakibg my 80 y/o mother) and yes I may feel tired but not like I need to sleep it off but then I have days like these past couple of days where I literally feel like someone drugged me with a sleeping pill and I absolutely need to go back to bed because I can barely function. What are my pain management options with no insurance? I prefer homeopathic type treatments if possible but after reading comments on here I’m really getting scared that my future is looking bleak.

Viewing 23 topics - 1 through 20 (of 530 total)