How do you explain RA symptoms to others?
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What do you do to manage your RA pain and what can you share with others?What invisible aspects of RA would you like others to know about?Share your thoughts and tell us how long did it take you to get an RA diagnosis?I have been experiencing more bouts of Veritgo lately, and wondering how many others may have Vertigo? I read there may be a link between RA and Vertigo. My first attack was 3 days of vomiting and not being able to even open my eyes. As I have more, the severity is less but they last much longer - my current one is going on for a week now. I constantly feel as if I have just gotten off the Merry-Go-Round or Tilt-A-Whirl after too long of a ride. Head movement and car travel makes it worse. I take meclazine 3 times a day and it doesn't seem to help.Of all the exercises that I do, swimming is the best. I now only swim laps, but more importantly do my entire workout in the pool! I jog, I do strength training, flexibility exercises, aerobic workouts, etc. By doing it in the water, I put almost no force on my joints which is crucial. I cannot say enough about how important this is. Many people say it is too much work to do this but if you plan ahead, get your gear together all the time, etc. you will find it is no different than any other type of exercise. Give it a try...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.I am a 28yr old, newly diagnosed mother of two babies. I've already terrified myself enough reading things online about this horrible disease. But I'm curious as to how long some people here have had it? And if you have had it for a long period of time do you certainly suffer other ailments that go along with it/caused by it? I.e. heart, lung, organ issues? Other auto immune disease? Thank you for your time, and responses.I have been on plaquenil for 6 months and I did my blood work this week for my 6 month check up with the rheumy tomorrow. Trying to figure out what to expect. C reactive went down from 3.8 to 1.9. But the Red Sed Rate went from 40 to 43. Does this mean the meds failed? Are we trying to get into the "normal" range of these test with treatment or just not increase numbers? Do the numbers affect stages of disease? help!I am trying to s start my own little research project. I would love to hear from other seronegatives, especially regarding lab results, symptoms, treatments, and any seroconversions. Research is what I did before I retired, so this is a way for me to try to cope with this frustrating and painful disease. And if anyone knows of articles, especially from reputable journals, I'd appreciate the links. And thanks to all those who care to and can participate! . Nancy.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.I used to workout a lot before I was dx with RA. Since the time I was dx several years ago, I have gained 80lbs. RA hit me really hard and we have had a really hard time finding a drug to control it. A couple times over the last couple years I have had rare times where I felt good and have worked out, I would feel weird, Like there was a electrical current running trough my body, and I couldn't work out with any kind of intensity. When I would work out with my friends that knew e pre RA I would push myself harder then I would then I would if I was working out solo, and it would seem I would end up in a flare. Anyway, recently I was started on a new med and hope to lose some weight , I started some easy workouts and those electrical currents are back. To make it worse when I went to see my former trainer and to tell him I need to lose some weight and we were talking about workouts, he was telling me to hit it hard, and I said I don't know if I can ever hit it as hard as I did back before RA, and he rolled his eyes. I'm sure it sounded like a excuse, but I don't think he understands, I don't want excuses, I want to give it everything I have, but don't don't know how or what is happening to me. I have been to my pcp, but she wants to blame everything on RA, my rheumatologist has done some blood work as it pertains to RA.I would be interested in knowing how many RA patients who are not below income level, have succeeded in getting assistance from their rheumatologist to obtain one of the drugs similar to Xeljanz? I have been on methotrexate (which put me in Critical Care for 9 days), Plaquinil, Leflunomide, Sulfasalazine. I now have totally kinky hair and an RA nodule. Is anything working I am wondering?Anyone on max dose of Methotrexate and still having a lot of RA pain and stiffness? I am supposed to be starting on Humira inj next month as well, but my doctor said I won't be able to change any of my meds for 6 months to make sure it's the Humira that is working/not working. I am worried about how being on two things that lower my immune system at the same time as I work in a nursing home and live with four kids who are little germ factories. Thanks!I am 63 year old female. I've had RA for 20 years. I've been taking Enbrel for quite a few years and getting by ok. About 6 weeks ago I got a cold which developed into a bad cough (which I am prone to). I got antibiotics from my gp and stopped taking Enbrel temporarily. After 2 or 3 weeks my cough was getting better but my RA pain was getting worse so I had a dose on Enbrel. The next day or two my cough set in again, worse this time. Another 2 or 3 weeks past with no Enbrel, and my RA was getting worse (but I feared being hospitalized with pneumonia as happened 4 years ago). I got another round of antibiotics. Then Friday, when I was at work, my RA suddenly flared up badly--all my joints became very painful. I could barely walk or get out of a chair. I had to ask a colleague to drive my car around to the door. I made it home and up the stairs with great difficulty. I had some predisone tablets and took about 20mg, but the next morning I was worse. I made it out to the living room and sat in a chair. But I could not get up. Fortunately my husband was home. There was no way to get in touch with my RA doctor on the weekend. Eventually we decided to call an ambulance. There was no way I could get up and walk down the stairs. Nothing like this had happened to me before so it was very scary. At the hospital they gave me an injection of prednisone and some morphine, and my husband took me home. I was able to make it up the stair with great difficulty. It is the next day now. I was quite a bit better this morning. I can get out of a chair and walk across the room. But I feel very shaky and weak. I've lost a lot of confidence. I guess I'm scared I won't ever get better. The good news is my cough is almost gone and I have started up my Enbrel. But will it every make we the way I was just a few days ago? I was certainly not an athlete, but I could at least walk slowly and get around. I'm just scared.Has anyone had any success or does anyone have any experience with the Clint Paddison program which claims to reverse RA?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. JulieHi 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.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!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.Hi, Does anyone have any knowledge about CBD oil and if it has worked for them to mitigate pain? Looking to hear both sides of the discussion. Thanks for the help!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!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!
Viewing 23 topics - 1 through 20 (of 532 total)