A message from a member:
Hi I was recently diagnosed with RA in February 2013. I was wondering if anyone has experienced severe pain and swelling from their elbows down to the wrist? Occasionally my elbows will flare up and is the most uncomfortable feeling when I have these it makes it hard for me to get out of bed in the morning, get dressed, cook, go to work, etc. I am currently taking methotrexate… 8 pills every Thursday and I take folic acid everyday except Thursday but sometimes the pain is so bad… I just don’t know what to do. Any advice from my fellow RA chicks would be greatly appreciated.
Thank you in advance for taking the time to help her out and answer her message. (((pain-free internet hugs)))
What our members have said so far:
Susan – Very familiar with this pain. Methotrexate didn’t work for me I am on enbrel and other dmards. I alternate hot and cold on my elbows wrists and neck then a good rub down with bio freeze or deep beet
Kelley – Oh yeah. Oh yeah. My elbows and arms have a long history of driving me crazy.
Christina – Remember RA can increase things like Tennis Elbow too. Might have that on top of traditional flares.
Karen – I do sometimes in my wrist , just prop it up and work it !!! Ice can help and muscle rubs
Alissa – I was in the same boat 2 years ago. I would use cold packs and rest up.
Nicole – Different meds work for different people….find what works for you and stick with it….I’ve learned my meds (orencia infusions once a month) and better eating….lots of water fruits and veggies and trying to stay away from carbs and night shade vegetables…..keep me in a pretty good place….my elbows still flare up now and again but I just push through….nobody here to dress me or do things for me so I have to….no choice….I also noticed once my stress level went down and I stopped working 12 hour days I didn’t hurt as bad…..sleep and rest is just as important as exercise and moving those joints good luck….feel free to message me if you have any questions….my main areas are my shoulders elbows hands and wrists that hurt as well
Lisa – I went to a Rheumatologist 2 weeks ago due to severe pain in both wrists and am awaiting diagnosis after blood tests/xrays. Was put on Meloxicam at lease temporarily and it really does not help much. I am happy I found this page and appreciate reading everyones comments and all the information you share. This is all kinda scary for me, but it helps knowing I am not alone and hearing others experiences!
Susan – Does anyone get it in the neck, base of skull area, I can hardly move my head tonight ?
Janice – I can’t move my head to the right. I’ll never get used to it. I have to physically move my body around in that direction to get a full range of vision.
Angela – It is terrible to say but that is a common pain with RA. You will find out a lot more pains are common. I don’t know about anyone else, but I have gotten use to a certain amount of pain everyday. Your Dr. will have to find what meds work for you!
Caroline – this sounds just like me, it gets to the point of me thinking how much more pain can you take, but you have no choice. i am in my 3rd year meds are 8 methotrexate, once a week , enbrel injection once a week, plus 4 sulfazalazine, diclofenac, folic acid and a couple of sleeping tablets every night. still taking all this and the pain sometimes unbearable
Wendy – (((Gentle hugs)))). It sounds like it maybe time for a chat with your rheumy doc.. Methotrexate did not work on me alone… Unfortunately RA is a tricky beast to fight, what works for someone may or may not help you.. It is a trial and error to see what works. Hang in there! I got diagnosed in 2010.
Karin – Thank you everyone I am under the care of a Rheumatologist and have an appointment with him today. I am going to speak with him about some of your suggestions and see if he recommends that I try other medications or diet changes. The pain seriously hinders my ability to do a lot of things (go figure I am an Administrative Assistant for the State of NY) so I would love to get back to the pain free days..
Karin – Thank you for the advice everyone I’m so confused on what steps to take next.. But with all of this great advice… I have a head start!
Sharryn – After almost 5 years of this horror, my RA Dr has me on an almost miracle drug Rutuximab (2 x7 hour infusions a fortnight apart) which have lasted me almost 18 months. Awesome stuff but only allowed on it after everything else failed miserably!! Methotrexate 10 mg weekly ( maximum my liver and kidneys can cope with) with lucovoren following day. Finally diagnosed as off scale RA in every movable part of my body, after 7 months of it going crazy. Will never be pain free but Rutaximab is the best thing ever!! Patently it is a slimy rotten disease and we are all just test dummies!! I am here in Sydney, Australia try to keep as active as you can!!
Lindy – 17 years of RA here – only just seem to be on the right combo of meds, it’s a bit of a trial and error game. Plus meth can take a while to work if swelling is a prob u should talk to Dr about a daily anti inflammatory also steroid injections into joint help. Some DIY – heat packs in the morning will reduce pain and stiffness making it easier to dress another trick to bring down swelling is to pop some letric soda (from washing department of grocery store) in a stocking, tie it over the swelling and wrap with bandage overnight- the salts draw out all the fluid I do this with knees and ankles quite a lot. It’s an old footballers trick – good luck
Cyn – MTX is great, but a biologic like Enbrel or Humira keeps deformity at bay. More than one med is often needed.
Barbara – It is all about what works for you. I’ve been battling this devil for 25 years. I’ve been on methotrex enbrel humira remicade retuxin and now on orencia. They will help for a while and then you will build up a tolerance to them but they are always looking for new ways to improve our condition. You are in my prayers the first few years are always worse.
Cheryl – If insurance is a issue with the biologics don’t be afraid to contact the drug manufacturer they have all kinds of programs for people in different financial situations and some virtually give the meds away.
Liz – I got approved for the Abbie patient assistant foundation because I couldn’t afford Humira. So thankful
Maggie – Very familiar with that kind of pain. My left wrist especially. Very painful. At one point, Prednisone was the only thing to bring me relief. I am now on Humira and what a difference in my life! I was deathly afraid of Biologics but I am so glad I chose to start taking it. I couldn’t imagine going every day with the pain I had. Also, VERY IMPORTANT: This worked for me. I eliminated CORN SYRUP; HIGH FRUCTOSE CORN SYRUP. I know it’s hard to change eating habits and the fact that corn syrup is in pretty much everything, I had to adjust. Now that I’m on Humira though, I am able to consume a small amount of it without feeling the effects. Just try it for a week and see if it makes a difference for you. Everyone is different.
Deborah – Yes, I have that type of flair also. It comes and goes in cycles. I am on the same med’s as you are. I use biofreeze that temporarily relieves the pain. Also I suggest get into a warm pool or if no pool lay in a warm tub of water and slowly move your arms and elbow. I’ve been dealing with RA since 1990. I wish you luck and hope for pain free days for you.
Mel – Self injection shot once a week called enbrel ,IT SAVED MY LIFE ,I AM 100% PAIN FREE , ask your doc about it its well known !!!!
Vanessa – My wrists kill me. Can’t do much….like hold a toothbrush, a phone, door knob..etc. I’m on Cimzia now and feeling somewhat better. Methotrexate did nothing for me.
Beth – Yes, it may be time to add more arsenal to your meds.
Danielle – Please try the MTX injections! I went from night to day switching off the tablets.
Cherelle – Most of my symptoms pertains to my upper limbs from shoulders down to fingers. I did okay with the pills but when I changed to the MTX injections I have done so much better. I have few side effects and my RA is manageable. When it gets too bad, I take aspirin. Advil, ibuprofen, and Tylenol just doesn’t help me. Hope you get to feeling better soon
Michelle – All good advice . My Rheumy told me the higher the tablet dose of methotrexate, the less gets absorbed in the stomach, so now I am on once a week injections of 25 mg. ( in 1 ml fluid) I am also on plaquenil & sulfasalazine and this combo works very well for me . When I feel a flare up developing I nip it in the bud with 50 mg voltaren and I find it works ! (Also panadol for the pain) over exertion of a joint & an excess of sugar/alcohol/( not that I should have ANY alcohol on these drugs) etc. give me pain & inflam the next day . I appreciate we are all different, so , keep trying until you symptoms are under some sort of control . Lastly, I find I get more pain & inflammation at the same time I get bloating with PMS . It’s all fluid retention and inflammation I suppose . I can’t wait to get my period, then all the swelling goes down !!! Hehehe .
Janice – Do you have any buzzing in your head? I had severe electric shock feelings and leg movements and I had to quit my plaquenil. They all stopped.
Michelle – no. I have never experienced those. I sometimes get restless legs at night when I am trying to go to sleep, but I have cut back on coffee/caffeine and now I don’t get them.
Kat – 8 methotrexate pills? sounds like a LOT! perhaps your tabs are smaller than ours over here. I take 20 mg which is 2 tabs. I was under the impression that 30 mg was the highest dose you should take orally. I hope your doc explained the side effects properly too. Also having just been diagnosed, I guess your disease is very active, and as such it will be very painful. Hopefully your docs will get the right drug mix to arrest the disease quickly. But of course if it is getting worse I would suggest going back to the doc. the early days count, especially, as other people have said – to avoid joint deformity.
Tammy – I was on plaquenil and methotrexate. I had more pains while on mtx. Went off mtx and stayed on plaquenil. I am feeling better doing so.
Shannan – swelling is part of autoimmune diseases. For me, when my knees act up, my legs turn into elephant legs and they literally get two times in size. Sometimes you just get the buildup of fluid do to inflammation, other times you could have swollen so much that pressure on the veins could cause lack of flow back up to the shoulder so it starts to build up in your arm. Be sure to talk to your doctor about this just to make sure you are OK.
Halley – I’m very new to RA and this happens to me A LOT! I also have a spinal cord injury so I thought maybe that was causing the swelling in my legs but I couldn’t figure out why I was swelling in my arms except that I just had to have shoulder surgery on my right shoulder. They look awful and I can’t do anything because I’m in so much pain! Does this have something to do with RA?
Holly – I take Orencia and Arava plus Naproxin for pain.. Ice works well. This has been a pain in the butt for 20 years…wish it would go away
Karen – Yes my left elbow I have the most trouble with. When it flares the pain goes out to my finger tips. I am on Enbrel, plaquinel, 8 methotrexate and meloxicam. When I have the flare I cannot hold anything. I do wear a brace as tight as I can get it and that helps give support. So far the flares have lasted two days. I’m sorry your in pain, i hope you can find something that helps you, good luck.
Lisa – Has your Dr. Recommended a biologic? The sooner the better. If the methotrexate starts to bug, spread it out, one pill a day everyday. Really worked for me.
Coco – Several years ago I had severe pain in my hand,wrist and it worked its way up my arm. The meds I was taking didn’t help so I eventually had a wrist fusion,they also moved tendons around in a couple of my fingers. After doing a few months of therapy I had no more pain and a lot more strength in my hand.
Janice – My wrists fused due to disease and I have no strength whatsoever. Anyone hear if surgery helped?
Sandra – Wearing the wrist braces helps a lot, even with the pain in my elbow/ shoulder. It has to do with the nerves and the swelling RA produces. Get the kind that does not strap around the wrist, only on the side.
Lynn – I also experience the same thing I am on orencia now so hopefully it will get better
Melissa – Methotrexate injection has been a miracle for my 13 yr old ..was told by her Rheumatologist MTX Pills don’t work for a lot of people but for some reason injection will …my daughter didn’t want to take the chance of MTX pills not working so opted for injection …very blessed to have found something that has worked when all else had failed for her
Carol – Ask to have therapy, takes a few weeks but helps. Ultra sound does the best.
Holly – Are you seeing a rheumatologist? If not, please do. Also, I will repeat what others have already said: try different meds until you find the right one(s) that work for you. I have had RA for 20 years next month. I had a lot of joint damage for the first 7 years because I was on meds that didn’t help. My doctor wouldn’t switch my meds so I switched doctors. I now take Arava and Naproxen. The Arava was a miracle drug for me. Good luck finding the medicine that works for you!
Liz – Arava was a total blessing for me too
Laurie – I had to start wearing wrists braces…for almost a year , Rheumy was treating me of RA but wasn’t sure that was it..until I had a MRI on them…then was diagnosed about six months ago , got my first shot of Enbrel, and was like a new person the next day….thank god…have not worn braces since…also on Methotrexate…just don’t ever give up… hope you feel better soon…
Katrina – I do get the pain when I wake up in the mornings. I sleep with my elbows bent and my fists closed, which seems to make it worse. I have my husband tape my elbows at finger joints at night so I can’t bend them and it really helps
Leta – Drink hot water and lemon juice every Morning
Angie – I have the seething in both arms now. It was only I one but now both elbows do it. I also have the problem in my right knee. It starts to hurt and swells all up into my ankle and foot real bad. I have to elevate it and put heat on for a while. I can’t walk when it does it.
Jeni – I have the same problems last night was my right foot and I am down now …I wish I could tell you it gets easier …but it don’t you just have to find what works for you …and get yourself comfy but this is us we live with it daily ;/
Bekah – Check with your Rheumy about Fibromyalgia and the latest scientific reasons for the malady and how it will always seem to tie in with Rheumatic and Autoimmune diseases..I’ll try to find the link again for you..I always told my doctors about the elbow to hand swelling and how the pressure was painful and how I felt too full of either fluid or blood in my vessels..Nerves burned and ached, muscles, etc…Just got this article a few days ago http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/ before I was diagnosed with SLE and RA , this was my primary ER visits and then eventually came the Fibro diagnosis just prior to SLE and RA…Please read this article and I hope this helps you talk better with the doctor about recent discovery..Good luck to you
Casandra – you sound like me
Carolyn – I’ve been there, taking the exact same meds but the metho was making me sick when taking 8 so I was reduced to 3 a day and now I’ve been on Orencia with it and I”m a new person. I am able to get up and dress my self finally. I feel so GOOD! it’s been 3 weeks now and I have soreness in my fingers, just enough to let me know it’s there, but no pain! I”m Praising the Lord every second of the Day!!! I’m finally getting back to normal. I was diagnosed in December 2010.
Diane – I have swelling from my elbows to the tips of my fingers. Sometimes the swelling is so bad they feel like they are going to explode
Tammy – Been on methotrexate and cimzia and I’m am so much better. I do wonder about all the terrible side affects from the meds. I have experienced a big drop in my energy level since diagnoses. Keep hanging in there.
Debra – I’m not sure if u have RA nodules but Enbrel has made a difference for me ive been dealing with RA for 15 yrs took everything under sun hope this helps
Karin – Another question for everyone… Has anyone tried the Anti Inflammatory diet or Gluten Free? Has it helped you?
Karin – I just found out that my insurance will cover Enbrel!!! It’s a $50.00 copay.
Coco – My wrist fusion was a success! They moved tendons around in my fingers and I have more strength now.
Linda – I’m so sorry, Hon. It’s a terrible disease. I’ve tried every kind of drug. i have so fair days and horrible days. next week i’m trying a cold laser therapy on my neck and shoulder. reduces inflammation with no side effects. you might want to look into it. going to get coverage as Physical Therapy. I also use a homeopathic cream (not just menthol like the others) PM me your address if you want some samples to try. Be praying for you.
Paula – Salon paas spray is great. I really like the foaming spray. Also, biofreeze is pretty awesome. Alternate between heat and cold. Gentle elbow compression via arthritis sleeve can also be helpful. I’m sorry you are suffering. If you continue to suffer from pain it may be time to discuss biologics. Good luck.
Karin – Hi Everyone! So I went to my doctor this afternoon and we discussed all of the different options. He is happy that I am no longer having as many flare-ups being on the methotrexate, however, I still have a significant amount of swelling in my hands, my forearms and my elbows.. so he is prescribing 5 milligrams of prednisone once a day, in the morning everyday. He also suggested that I begin with Enbrel injections after the holiday. If I am NOT able to do the injections then he wants to put me on methotrexate, plaqenil and the other med that begins with an S. I would still have to take 80 methotrexate pills every Thursday and the other medications would be 6 pills total everyday
Angie – Remember you will never be free of pain. My rheumatologist reminds me all the time that meds are to ease the pain, not to get rid of it. Look into Mtx injections (pills didn’t help me) along with a biologic. It will take time for you to feel some relief. Also, don’t give up if you get some side effects. They should eventually go away. Good luck to you. Oh and BTW, Yoga has also helped me so much.
Lisa – I developed a paralabral cyst and partially torn rotator cuff which resulted in frozen shoulder, all probably due to RA. Shortly thereafter, I developed horrible pain in wrist and elbow and a nodule on my pinky finger. However, Dr. said the pain in my wrist and elbow was due to overcompensating for my shoulder. I’m not sure he’s right about that.
Melissa – Thanks for this question. I have the same issue but not as bad as yours. Mine got better with remicade infusions. It still flares but is much better. I hope you get relief.
Camille – Before my diagnosis I had pretty significant swelling in many of my joints, affecting getting dressed, even bathing was challenging among other things. With my regular GP I know what helped me almost immediately was that I was put on one of those tapering packs of prednisone. This brought things down and made me functional again almost immediately. I went to see a rheumy within a month and my rheumy put me on folic acid and methotrexate as well as 10 mg of prednisone per day to continue to deal with the swelling. I was also put on mobic which tended to affect my stomach. Since then I have been weened off of prednisone and now also take sulfasalazine and plaquenil with Celebrex when I need a boost for pain. Perhaps you need to speak to your rheumy about the addition of some other drugs to help bring your swelling down. I don’t have an experience where methotrexate alone helped me with pain and swelling.
Sherri – Really I have had RA since I was a child. The advice here is wonderful and it gives many ideas to try. What works for one may not work for another. Your pain is individual like you are. I take multiple medications but I also do yoga. The great thing about yoga is that you find the stretches that help you. Swimming is also a great way to destress if you can. It is also great exercise too. I have days when I want to just crawl under a rock but those are the days that a little self pampering goes a long way. Be kind to yourself and keep trying. Work with your RA and team (physical therapists, internist and maybe alternative medicine). Your RA works for you and you should work together.
Kathleen – I have a very mild case and haven’t had a bad flare in years (knock on wood) but my Grandmother had what you describe-she kept her arm elevated as much as she could on a pillow and used moist heat-i am sorry you are having this pain arm pain is awful.
Lisa – I’m also VERY familiar with this pain. On methotrexate (8 pills a week), plaquinel, folic acid and humira injections. Have you tried adding Cymbalta? I also try heat and cold packs for those areas of pain.
Kerry – been dealing with that same pain myself, along with others just as intense, Humira gave much relief but off it right now. it’s hard when u have so much to do but trying to keep the movements as limited as possible really helps…….and if possible, hot baths with Epsom salt, really gives me much relief!! If u are a caffeine drinker…..try to cut it out……it really does cause flare ups.
Renee – Have you quizzed your pharmacist? I am a pharmacist and an RA sufferer. See what info you can gather at the pharmacy!!
Linda – You know, I kept having pain in my right wrist, My right arm is the one that gives me pains all the time, I could not move it without pain, I have a regime of Enbrel every week too no avail, so my Doc decided to put me on Sulfasalazine, now everyone cant take that, I tell you, My pain stopped within, I wanna say the next day, It was amazing, I take this alone with my Enbrel, have to be monitor for it, but WoW, I have no more pain, in my wrist, hope that helps..
Stephanie – Get on a biologic ASAP if you can. Don’t worry about cost and ask about copay assistance. Best of luck with the elbows. That truly is one of the most downright nauseating kinds of pain! I remember a couple years ago being on the med merry go round and waking up with my elbows stuck-it was miserable! Hope you find something that works.
Margaret – Both of my elbows hurt like that, but the right hurts worse. I have found that if I wear a “tennis elbow brace” it helps a lot. My meds are Sulfasalazine.
Jennifer – I actually get the elbow pain often. I find that staying away from certain foods really helps. Look into the paleo diet. Start removing certain foods from your diet and you will see which ones make it worse. I have not been given the methotrexate to try due to the side affects. I do take Tylenol Arthritis and it can take the edge off. Good luck!! I hope you are able to find the best solution for you.
Patricia – Methotrexate did not work for me either. I take Prednisone daily, along with my Humira every other week.. Been taking it for about 2 years now & wow do I feel better & can do so much more.
Cheryl – Its true too about the nightshade family. Stay away if possible and white sugar of any kind. And don’t smoke.
Liz – are you on a biologic yet or prednisone?
Cheryl – I have the same issue. Is much better after my rheumatologist added 5 mg prednisone to my “cocktail”. When it first started I got relief from kenalog shots but it didn’t last long. Don’t be afraid to try different medications. I’ve take several and am stilling searching for the one that will put me in the remission I experienced with Enbrel.
Cathi – I have the same issue. Sadly I have perm damage in the elbow. But I am on a regimen very similar to yours. Right now we are investigating more. For comfort, I do heat wraps.
Lori – Very familiar with this kind of pain. I was taking Humira and Metho. Stopped the Humira and now currently taking just Metho but still looking for my miracle combination. My hands and wrists are my biggest areas of aggravation. I do have RA nodules on both of my elbows and heat seems to only work for me.
Katrina – Elbows *and* finger joints
Janet – I can’t take Enbrel or other biologics and I have used heat and biofreeze for years for immediate relief. However, don’t hesitate to call your doctor with concerns! He/she may need to adjust your meds or add another med!!!
Rebecca – Yes i do every morning and sometimes in the evenings! I use ice and heat and of course take my usual meds. Oh and also the hospital gave me therapy putty to squeeze! Hope something works for you! I truly feel for you!
Betty – So sorry for your pain… I have more in my hands and wrist.. Hang in there, and pray for a cure one of these days.. Hugs
Michelle – Also everyone, if you take 2 plaquenil tablets per day ( I think 200 mg each) I strongly recommend yearly visits to an optometrist/ophthalmologist – as they can detect early any vision issues that CAN OCCUR with plaquenil on that dose .
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I am doing with RA for 33 years have been on almost all drugs possible they’ve got me back on oxycodone and etodolac and have fiber my algae out in constant pain 24 /7 take a hot bath with Epsom salts and a crippled legs can barely move and have arthritis in my back also have crippled elbows, where wrist braces almost all the time I do cry a lot any advice on there for me.
To Susan: I’ve had severe neck pain at the base of my skull/neck and an MRI showed crowding of my brain, otherwise known as Chiari. Be sure to have your neck pain checked out! I dismissed my symptoms, as RA, for 20 years before finally being diagnosed with Chiari. Good luck!
I have not found total releif with any of the above mentioned medications. I recently started trying acupunture and oriental medicine and I believe that is the route I am going to take. I do know eating better/cleaner will help. My big problem is swelling in my hands/knees and feet. I have been using Tumeric for that. I eat it by the spoonful. It is a nateral anti-inflamatory. I’m tired of being pumped full of drugs that are doing no good and I don’t know what they are doing to the rest of my body. I also bought the booties that you can heat in the microwave or freeze in the freezer. They also make gloves that work the same way. Also, hoping the best to everyone. It is so difficult when others don’t understand (especially at work). Thank God my boss does!
I have enjoyed unbelievable success from my RA with Antibiotic Protocol. I was wondering if anyone on this Forum has researched this? I have been on the same Antibiotic for 16 months now- small dose – one capsule every other day, and may have to do this for the rest of my life. It doesn’t cause Antibiotic resistance in the same way as Antibiotic therapy for acne doesn’t cause it. I have all my hair, my Liver is healthy, and the cost is less than $20/ month. I was able to field any questions that I had from the Community at Roadback Foundation.org. (I think it would be great if the Roadback was listed amongst the resources here on RA Chicks.)
PS – Antibiotic Protocol is not unlike the Hero’s Journey.