The thing to understand about inflammatory arthritis pain is that it’s always there. It’s not like muscle pain that happens when you use the muscle, or a broken bone that hurts when you use the limb. Arthritis pain is constant. There’s no comfy position to get into so that it doesn’t hurt.
I have pain every day. Sometimes it’s mild, sometimes not so much. No matter what, I try to put a smile on my face and deal with it. Why? Because there isn’t really a choice.
To some people, I would be in a permanent flare. I don’t really look at it that way. I think most people with RA have a baseline level of pain. For some, this is pain free. For some, this is mild, occasional aches. For some, this is daily aches and pains, from mild to moderate to severe.
Severe pain all day every day is what I would call perma-flare, and there are people who are forced to go through life this way.
My baseline is mild to moderate daily pain in various joints. Usually not all at once, and the worst affected joints move around. Some days it’s my hands and feet, some days it’s my neck and hips, some days my lower back.
Today it’s my ribs and my jaw that are giving me the most trouble.
Yesterday it was my hands and feet – ‘classic’ rheumatoid arthritis symptoms. Tomorrow, who knows?
And then there are flares. Full body mega flares I call them.
So what does a rheumatoid arthritis flare feel like?
Rheumatoid Arthritis guy put it like this:
Imagine having all your joints slowly pulled apart. Now, imagine not having to imagine it. This is rheumatoid arthritis. —RA Guy
I think that sounds pretty accurate.
Flares hurt a lot.
For me there is dull but strong pain in my wrists and ankles. My lower back feels like someone is twisting a knife in it. My knees ache, and then suddenly feel like someone has stabbed a screwdriver into them. My ribs squeeze my lungs, so that it’s hard to breathe. It feels like maybe I’m having a heart attack, or someone is crushing my chest. There is no way to sit, no way to lie down, there is no position that eases the rib pain. There is no way I can wear a bra!
Knowing that it is my ribs (costochondritis) helps with the anxiety. I know I’m NOT having a heart attack, no matter how bad if feels. It’s just pain. Empty, pointless pain.
My jaw is throbs (TMJ disorder). It feels like the worst earache ever. But my ears have been checked…there is no infection. It’s referred pain from the jaw. I have a constant headache radiating up from my jaw. Opening my mouth hurts. Closing again it hurts. Chewing is not an option. Not that I have an appetite anyway. People tell me I slur my words…that’s because I am trying to move my jaw as little as possible. Smiling hurts. I try to smile anyway. I may as well.
Sometimes out of the blue my big toes will just explode. Big toe…hahahaha…how bad can that be? Yeah, pretty bad! It is searing pain that will stop you dead in your tracks. Not so funny. Your big toe helps with your balance and takes about 40% of the weight of all the toes. It’s pretty important. When it’s flaring, if it doesn’t make you scream aloud, it sure makes you walk funny.
And now onto my hips. Again, there is no way to lie, no way to sit…hips, lower back, it all merges together. The tendons also become inflamed (enthesitis), so moving hurts more.
My shoulders ache…it feels like there are lead weights on them. Some days I can’t raise my arm very high. Some days I can, but its excruciating. Some days it just hurts a bit. Because my shoulders are inflamed, out of alignment…something…the muscles all down my back spasm. Massage helps temporarily. Some days it hurts too much to be touched.
Then there are my eyes. I often wake up with red, raw, dry, painful eyes. Sometimes I have to sit in a darkened room until it subsides. This is most probably iritis (anterior uveitis).
Inflammatory arthritis pain is constant. It doesn’t quit. It wears you down. I think the constant pain is the cause most of the fatigue I experience…most of my brain is trying to block out severe pain and keep functioning. That’s exhausting.
So what can be done? Prednisone burst. Heat packs. Topical creams and gels. Hot showers. Extra nsaids, analgesics. Rest.
A true full body mega flare? Nothing, really, can be done. Nothing touches it. You just have to hope it doesn’t last long. Mine are improving. Lately they only last 24 hours or so. Recently they were lasting 4 days or so. The longest one lasted 4 months. This is child’s play to what I’ve read some people experience. Some people are in full body mega flare all the time.
I don’t know how they cope. They have to, I guess. Because there isn’t really a choice.
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I’ve done the “go to the doc to make sure you’re not having a heart attack”. It is nice to hear your heart is fine, but bites that there is no real solution to make it feel better fast. I hope you can find some solution to lower your pain levels soon.
Thanks C…same to you.
Ive done the lay n bed & felt too silly to ring an ambulance thinking if it wasnt a heart attack everyone would laugh at me.
Eventually I got to the Rheumy who is 350 klm away & he told me, when that pain is happening it is Fybromyalgia – I have this type of flare up because apparantly I have too much stress in my life = I suffer from inwards stress – if I was a normal person I would shout & scream, chuck a tantrum every now & then & that is called outward stress relief
We RA sufferers go through so much pain & everyday issues we harbour all our feelings
What is the treatment – he gives me a couple of injections in the chest to ease the pain. one in the lower back – a stern talking to, suggests yoga – suggests I tell the kids I need a 1 day a week NO GO ZONE – hahha obviously he doesnt live in the real world. But I must admit I always feel a bit better after the visit – he is the only person – that seems to know how I feel, everyone around me keeps saying you look so healthy – i wish there was a majic switch so they could feel whats going on in the inside
Acupuncture in the knees & ankles does give some relief – ignoring the housework for a day – staying in my office & let the staff do what ever they like occasnally – definately not having any acidic food & drinking plenty of water (at least 2 litres) a day
I’m sick of being practical – probly not the only one
I must say – I though I was the only one having the fake heart attack –
It feels kinda good to discover other people have gone through the same things…even when you’re sorry they are in such pain too! Unfortunately, everything you are describing is so typical. Rheumy has been telling me to get rid of the stress in my life for years. Well, I’m a single mother now, with a child on the autistic spectrum…not realistic. I DID take up a yoga based class though – that has helped tremendously. DEfaintely as much for my mind and spirit as the strenght and flexibility in my body. AND I see a psychologist once a month. He specializes in chronic pain, and once a month I vent to him about all the pain, the things I couldn’t do, the stupid things people say to me…It really helps. My treatments from him is subsidised by medicare here in Australia, so it only costs me $5 to see him. Otherwise it would be an expensive impossibility. I don’t know if you can access something like that?
Good luck Jac, it sounds like you’re doing everything you can, and I’m glad that you have an understanding rheumy at least. Take care.
Lol wow did u make me laugh. I am a fibromyalgia sufferer as well as rheumatoid arthritis. I, too internalize too much. I suffer from “can’t let go of stress” or so my family says. So – maybe you and I have twin brains or bodies. Idk lol I have suffered with chest pain so severe that I drove directly to the ER and said I think I’m having a heart attack. Well I’m also hypertensive so they thought possibly shes telling the truth. But three days and many tests later – the cardiologist looked at me and said “ignore the chest pain, its no heart attack. – heart is good” … Thank God, especially since when are you TOLD to ignore chest pain. Any who, I’ve written off so much to fibromyalgia – why not – the drs do. Basically, I just wanted to write and tell you. You are not alone! And to thank you so much for making me smile, nope I laughed. Laughter is still the best medicine.
I too suffer with Flbromyalgia and the pain from that is beyond normal levels,its like an nightmare you never seem to wake up from.I also have RA now i hate it when someone says …oh yes i have a bit of that behind the knee……….I just want to shout at them, someone should tell them yes they may have arthritis, but not what i have, …..heavens give me a break.
I used to smile and ignore those people Rachael, but I find I can’t anymore. I tell them straight that you can’t have a bit of RA in your knee. Sympathies for your pain, but imagine that pain in every joint and now we’re getting somewhere! Not to mention all the rest of it! Fibro is terrible pain as well. I can only hope and wish you’re having more good days than bad. Best to you Xx
Definitely get the “Oh I have that to…i just take some ibuprofen and it help. Have you tried that?” I really want to scream at them but they don’t care. I just got diagnosed with Sero negative RA. Have been in pain for a solid 15 yrs. but in tucson rheumatologists make you send in your file before allowing an appt. I have been diagnosed with fibromyalgia and PCOS and stage 4 endometriosis resulting in nerve damage to my sciatic nerves and hysterectomy. All b4 40 so they refused to help. Reached a tipping point when my hands wrists and toes and ankles swelled to twice the size. Had to drive 2 and a half hours with my 4 yr. old son. She gave me a methylprednisolone shot and dosepack along with lab and x-ray orders. It helped for 8 hrs after each dose. Went back and she said RA. Now on 3rd week of methotrexate and taking 12mg of methylprednisolone daily with folate. So exhausted and I hate the looks after parking in handicapped parking. If they had this ball of pain they would be crying in a hospital. Sorry just needed t o vent to someone who gets how harsh the pain and exhaustion are.
[…] by the medical community as some of the worst pain there is. People ask me occasionally what does a Rheumatoid Arthritis flare feel like. This is what a flare feels like. Some people have flares every few weeks…or every few […]
I just read your article because I am having a severe flare in my right shoulder and was trying to check into it a bit more. I am so happy to hear I’m not crazy and I’m not the only person who has this kind of pain!(sorry) When I go to my RA Doc he just looks at my hands and says “you seem to be doing well”. :/ I don’t feel well – at all! I am sorry there are others out there like me, but it is such a relief knowing it. I am sure lots of other people feel this way. Thanks for writing.
Another rheumy obsessed with hands! Rheumatoid Arthritis is about a lot more than hands!!! My hands look pretty good….they don’t feel good. What treatments are you on, Margo? I hope your doc understands that you’re not doing as well as he thinks, and that he listens to you. If not, it might be time for a second opinion? Good luck. Thanks for your comments
Methotrexate only, tried Humira and Enbrel, no relief. I took myself off painkillers because i was turning into a “beotch”. I take advil pm every night to sleep. I just went to my primary, she ordered two MRIs, lumbar and cervical, both came back showing multiple bulges and the lumbar is hitting a nerve. Suggested cymbalta, maybe injections in the back. Also strongly suggested a new rheumy!! just made that appt. Thanks for responding. Take Care.
I’ve heard of some people who say the Specific Carb Diet has helped them, and slowly, it is helping my fibro pain. It’s been tough, but worth it. I have a lot of old injuries that seem to still have bad inflammation and it’s helping with those as well. I’ve had so many injuries since I was a kid that I just can’t take anti inflammatory meds anymore. They wreck my stomach and everything else now, and I can’t imagine how much steroids would mess me up. But maybe this will help permanently – thought I would share 🙂
Thankyou Erica. I will look into the Specific Carb diet…I haven’t heard of that one?
First, I want to say thank you for sharing this. Second, seriously THANK YOU! Im newly diagnosed (November 2012) and the first month of onset was as you call it “mega flare” everyday all day. I had no meds to help as Im allergic to most pain medicines the most severe is Tylenol(acetaminophen) and so yes, you just keep going because what other choice do you have. Since I am a newbie so to speak and mine was caught very early (though no insurance is making getting proper treatment…impossible) I feel silly or overly dramatic when I want( not actually doing it) to tell people how this is REALLY effecting me not just the pain but how it is draining on me mentally and emtionally. Depression is nothing new to me, but this… this is so different because this is real, really real and seemingly not in my control so yea, it is taking a toll. I have only one person to really talk RA with and she’s a blessing but I don’t want to be a bother or become a nuisance so I limit RA talk/complaints thus I’ve turned to online forums and blog sites; my favorite thus far is Rawarrior.com however your post has done what Ive been seeking from the start of this, someone who GETS IT and you describe it perfectly. When I read ” It’s just pain. Empty, pointless pain.” I knew I had to write this and thank you from the bottom of my heart!!!!!!! I pray you have more good days than bad and that you truly smile (sans the pain) reading this has been a blessing. Again, THANK YOU.
Thank you Alexis…its people like you that keep me going too. We all need somewhere to go to vent, and online forums and facebook pages can be excellent for finding some support, from the only people who really understand – other sufferers. Although we all have different symptoms, and degrees of disease we have more in common than not. I hope you are getting proper treatment…what meds are you on? It always comes down to money…which I hate. In a perfect world it would be about who needs the medications…not who has the money to pay. I’m glad you have at least one ‘in person’ friend that you can talk to. I think that makes a huge difference in keep depression at bay. And we’re always here for you if you need to vent! Take care…I hope your pain levels start to go down soon.
Im only on Tramadol and cyclobenzaprine right now because I’ve yet to be seen by a Rheumatologist. My doctor at my local health dept. diagnosed me and referred me to a Rheumy but I could not afford it, but since she is amazing she found a state clinic/program that takes uninsured patients ( of course there is a fee but not nearly as much as it could be) my fist appointment is on my birthday which is bitter but oh so sweet at the same time! Ive been in denial about having RA and that’s just my coping mechanism but its kinda hard to deny the constant nagging pain or as you so perfectly stated ” It’s just pain. Empty, pointless pain”, the fatigue, etc. etc., but I just wanted it to be something, anything but this… yet no matter how much I deny the MANY blood test and exams don’t seem to get that I DONT WANT RA( I have to laugh sometimes… it keeps me sane,lol) I appreciate you responding and for having this outlet for us!!! Blessings!
Im currently only on Tramadol ( which barely takes the edge off during a flare but its better than nothing) and Cyclobenzaprine (which just puts me to sleep but I’ve woken up in pain… but again its better than nothing)… I have my first Rheumy appointment next week on my birthday, which is bitter sweet but Im hoping to get on a treatment plan that is helpful on a daily basis because just like you, I think a lot if the fatigue is simply because we push through and our body gets overwhelmed and forces us to “sit down” so if I can get it some what under control, life I hope and believe wont seem so daunting at times… Thanks for responding and thanks for giving us a place to vent, learn and cope. I will definitely be a regular here Blessings!
Hi Alexis, I hear you…tramadol isn’t enough. I hope your rheumy is helpful…and aggressive with treatment. Don’t be afraid to ask him for better pain meds…being able to get some sleep makes the world of difference. But hopefully he can give you some meds to get your inflammation and pain under control quickly, until the DMARDs kick in. Please write back and tell me how your appointment goes (here on on the facebook page!) And I hope you have a very Happy Birthday!
Will Do!!! Thanks! ( sorry for the double response, my computer froze when I hit submit and I didn’t think it sent, lol)
Thank you, Thank you for sharing. You understand. People can not see it so they think it is in your head. There are days I want to rip out my spine it hurts so bad. When you are walking you are crying in your head because of the pain and trying to keep your ballance, thank you, thank you for allowing me to see I am not alone ((((((soft soft hug)))
You’re never alone, Jessica. I’m sorry you’re in so much pain…I hope you can get some relief soon. You’ll always find support and understanding here 🙂
An outstanding share! I’ve just forwarded this onto a co-worker who was doing a little homework on this. And he in fact bought me dinner simply because I found it for him… lol. So allow me to reword this…. Thank YOU for the meal!! But yeah, thanx for spending time to talk about this subject here on your site.
[…] my doctor this week for help. I’m also super thankful to all of the RA bloggers in the world. This blog saved me from heading to urgent care. I’m okay. I hurt and am uncomfortable. I’m […]
I have diagnosed a little over a year ago and have recently experiencing pain in my rib cage. It frightens me! I was starting to panic about it (for the millionth time) and I ran into your blog! Thank you! Any recommendations for a comfortable bra? I’m ready to burn all of mine! I’m seeing my rheumatologist ths week so I can figure out for sure what’s going on…. not for sure it’s Costochondritis but it sure makes sense! Thanks again!
I was diagnosed a little over a year ago and have recently been experiencing pain in my rib cage. It frightens me! I was starting to panic about it (for the millionth time) and I ran into your blog! Thank you! Any recommendations for a comfortable bra? I’m ready to burn all of mine! I’m seeing my rheumatologist ths week so I can figure out for sure what’s going on…. not for sure it’s Costochondritis but it sure makes sense! Thanks again!
It definately is scarey at first. Once you know what it is, at least the fear goes. Its not dangerous…just incredibly painful. Just! LOL. I hope you can get some relief. I have some soft, no underwire bras. They are sort of woven, and in one piece. They can be difficult to get on, but once I’m wearing it, its very comfortable…no underwires, no fasteners.
Thanks for the tips! I love your blog! Thanks so much!
Thanks Shelly 🙂
I must thank you for tthe efforts you have put in penning this
website. I really hope to see the same high-grade content by
you later on as well. In fact, your creative writing abilities has
motivated me to get my owwn blog now 😉
Thank you so much for this article.
Although it may not educate as many “healthy / normal” people as we would like, however it helps to make fellow sufferers feel less alone. Especially when we are at our weakest and most painful.
Again, thank you.
Thank you Trish. It’s just sad that so many of us know exactly what it feels like. You’re never alone xxx
I’m so happy I found your site today. I was diagnosed 2 years ago, but had symptoms for about 4 years before they figured out that I have RA and fibromyalgia. I get so tired of people at work asking what I did when I limp. I think they think I’m making it up because sometimes it’s my ankle, sometimes it’s my knee. Sometimes it’s my hips because I’ve been limping due to my ankle or knee. My main issue is always the fatigue. I never thought about the fatigue being so bad because I’m constantly fighting pain, even when it’s at a lower level. I still work full-time but that is basically all I have the strength for. The guilt I feel because my husband is cheated out of my time and energy are the worst! While I hate to hear of other’s pain, it’s nice to know I’m not alone.
This is a great website I typed in I want to know the truh about RA I was diagnosed two years ago
I took 5 lorabs 3 muscle relaxers cymbalta ambien and that was all before
The RA diagnosis I have had 3 neck surgeries 2 back surgeries a knee surgery
If I had to deal with his just with NSAIDs I couldn’t imagine the pain
The rheumy has me on actemera injection now ur before that
Methotrexate plaquenil cyclo something Humara embrel.
Thanks for the blog
Its a long journey to find meds that work. I hope you’ve found a combo that gives you some relief.
My rh pain is with me constant and makes me feel sick the pain rips thought your body including muscles I had rutuximab infusions in April no joy just more Heath problems I take loads of pain relief but nothing touches the pain it’s horrific searing I had pain in left arm so severe thought I was having a heat attack it lasted a week but checked it out at hospital and they said nerve pain I’ve never felt pain like it and telling others is difficult I mean I look ok it wears me down sometimes I want to die I’m 51 and had this since I was 37
I’m so sorry Belinda. The pain can be absolutely terrible and you never know when or if its going to give you a little reprieve for a while. What kind of pain relief have they given you? Clearly its not enough! Hang in there…thinking of you. xx
Hi they gave me naproxen steroids paracetamol and codeine I’m also taking methotrexate the retuximab has not worked and they want me to have more it scares me and what if it doesn’t work it has side affects and leads to more problems I know no one can help it’s just a cruel illness belinda
It really is cruel, Belinda. I’m sorry. I think the hardest thing is that all these drugs are scary with dangerous side effects, and there is no guarantee they will help. We just have to have faith and try. Because the alternative is to live without any hope at all. When is your next infusion due?
I stumbled on your post when I googled ‘Rheumatoid Arthritis in jaw’ and I’m happy I did! Sometimes I google how bad things can get to sort of prepaire myself for what could happen. I was diagnosed with RA when I was 18 months old, some people feel bad for me, but I am actually thankful I’ve never known anything other than how my life is now. I feel bad for everyone here in pain, especially our kind of pain that doesn’t show itself. Growing up I received ZERO sympathy from ANYONE (that didn’t know me) because I should be running around like “normal” children. I’m 25 now, and it seems like every year my arthritis pops up some place new, and I have very limited medication options because there’s only so many to try. I’ve even become one of those statistics that you read on the back of bottles or injectables that warn you of cancer, I should probably play the lotto 😉 I sincerely appreciate this post, it’s nice to feel less crazy and alone. My heart is with anyone who struggles to make it through the day, knowing that you’ll be 10 times stiffer when you wake up. (Heated mattress pads are glorious)
Very nice post!! Arthritis is a condition, where you feel sever pain and stiffness in your joints.
I find so much comfort in reading all your posts. I am newly diagnosed (a month ago) although have have been trying to figure out what it was for a year now. Some day s are better than others…..but I have more bad than good right now. I am on methotrexate, 15 mg. a week. And prednisone 10 mg. a day until the methotrexate takes effect. The prednisone seems to keep some of the everyday swelling down, but I have learned very quickly that prednisone is no match for a flare up. I had one in my big toe this last weekend, it hurt so bad I just cried. I don’t think I am relaying to my RA doctor the amount of pain I am in. I asked about managing pain, and I was told to start the prednisone and methotrexate, ibuprofen when I need it. Ibuprofen does nothing for me. Does anyone have this? I would just like something for relief every once in awhile. Is that too much to ask?
Thanks for giving me something to show my family. I hadn’t had the words like you do. This explains it like it is.
The screwdriver into the joint. Finally!! I kept describing it as someone jamming a butterknife in between the joints and then moving it back and forth in a prying motion. I’m newly diagnosed (this week) and starting treatment next week. I’m 30 and after simmering for a few months (whack a mole with joint pain) everything just kind of exploded at once in June. Mega flares, fevers, debilitating exhaustion. I’m so glad I discovered this blog.
So sorry to hear of anyone’s suffering. Hang in there. I would consider my pain mild to moderate most of the time. I came off all medicine 25 years ago. I do not believe I would still be alive if I had not made that choice. Yes, it is difficult but one doesn’t realize how many problems are caused by the medications in addition to the disease itself. I credit regular chiropractic care, my religious faith, my husband,Danskos,an anti-inflammatory diet, and exercise for my doing as well as I have. Yes, of course I stray from my diet, I am easily tempted. Yes, there are times when I cannot exercise. Yes, I have flares from time to time. I feel pretty well most of the time but when I have a flare, undergoing one now, the pain is debilitating. No one could imagine unless they have experienced it for themselves. Hang in there RA warriors! Love to you all <3
I was diagnosed with RA 10 years ago. I am not on any meds except Tramadol for pain. After reading your post I was surprised to see that no one mentioned the burning pain in joints. That’s what my flare ups feel like. My knees or hips feel like they are on fire. Luckily aspirin and rest seem to hold me over till it subsides. I feel for all of you who have to deal with RA.
I have only been seeing a rheumatologist for just over a year but was actually diagnosed by a stroke doctor about 10 years ago after a brain scan! I was fobbed off though by other rheumatologists with “it is fibromyalgia and there is nothing you can do but take pain killers”. I was interested to see the red blobs there at the top and bottom of the hip joints. I have had the worst pain ever – indescribable in my hips and seen many people who had no answers and I could only try to describe it as though a chisel was driving through them. The pain was worst at night if I lay on my sides and in the sitting position. Two years of sheer hell – no pain relief worked and I felt that nobody even believed the pain was that bad. It is starting to get bad again and I just don’t know whether I can go through another two years, two months even. Anyway, back to the point – nobody has ever said that this was due to the RA, even the rheumatologist. I have just had blank looks from all specialists and “sorry, I don’t know what is causing that”. Scans in my hands and shoulders showed inflammation, but still a locum doctor said it was fibromyalgia and I would always be in pain and always tired and may as well discharge me as there was nothing they could do for me! I have today been back to see the doctor and asked for another referral to see the proper rheumatologist. My doctor has also said that I should think about trying morphine patches, but I really want to try the alternative treatment and I am starting with turmeric and wonder whether anyone else has tried this, with coconut oil and black pepper?
I have tried turmeric and black pepper. There are studies that show it can be as effective as an anti inflammatory medication. It didn’t do much for me, but we’re all different, and I hope it works for you Sharon. I’m curious, what did the stroke doctor see in your brain scan that lead him to RA? I can’t believe you had scans showing inflammed hands and shoulders and had dreadful hip pain and no one thought RA! It’s a big step going on morphine (or any other narcotic) pain relief. There is a lot more that could help you before that. I hope you’ve seen a rheumatologist now, and have started proper RA treatment. I’m sorry it has taken me so long to respond. I’d love to hear your you’re doing now. Take care x
Reading this has helped me feel so good. I have been feeling so alone with my flare ups and tiredness, it’s good to read a blog that finally explains how I feel. I’m waiting on a rheumatologist appointment so for now I’m taking anti inflammatory drugs that my doctor has prescribed. They take the edge off my pain but the tiredness and burning I feel in my joints and muscles are wearing me out. I work full time and go to college part time. I know when a flare is coming on because I get a flu like sensation in my body, even my eyes cry and look swollen, and my face swells up. Hope to get some relief soon but I wish every one of you peace with this horrible illness xx
I just found this website and am so relieved. I too am tired of being told that “I don’t look sick”. I have been diagnosed with RA for almost 5 years. Currently on plaquenil, methotrexate(1.0ml injected once a week), nabumetone, tizanidine for muscle spasms and tramadol I rarely take bc of GI issues. Recently saw a neurologist for nerve issues and found out I have fibro too! The FM diagnosis came a surprise, they did a nerve biopsy and I have lost nearly 50% of my nerve density in my arms and legs. I’m 32 years old and never in my wildest dreams did I anticipate this direction my life has taken. All of my life I have lived in some kind of pain, I also have Hashimoto’s thyroiditis(autoimmune hypothyroidism where my body destroyed my thyroid gland by 93% by the age of 4yrs old. They went in for exploratory surgery and I have nothing left but a little bit of tissue where my parathyroid glands sit(thankfully in tact n fully functional) So many times my pain was attributed to my thyroid levels being out of wack, symptoms are similar to RA aches and pains. I feel lost most days, just wandering through the pain. My Rheumy is so-so, not as hands on as I’d like but he is the “best in the city” as per several medical journals and other physicians. Ugh, just tired of it all and ready for it to end.
Hi Ashley, that’s a whole lot to deal with, sounds like you can’t remember life without pain. It wears you down and cam tale all the joy out of life. Sometimes I’m ready for it all to end too. But in truth, I just want to live. I still remember having a life, no pain, energy…fun. It’s not easy facing a life where it will never get better. I can only say I understand what you’re going through and I wish I could make things easier. Hold on to the people who love you, and let them help. Hang in there. Xx
Wow. Glad I found this. I was diag. in 2005 with RA, but suspect I had it at least 8 years before that. Last year, diag. with RA-Lung (Intersticial Lung Disease cause by RA) and it is also beginning to mess with my heart. I’m on my way out, they say. 4 maybe 5 years, if I’m lucky and I don’t catch another gnarly infection. The one thing, now, that never stops hurting, ever, is my neck. Dr. says my neck is crushing under the weight of my head (haha). I remember when my prednisone scrip would expire before I’d use it all, now I’m on 10mg a day, and really need it twice a day, but don’t take it more than once due to the massive weight gain in the last year since my lung infection, and the roid rage. I hate RA. But its always good to know I’m not alone. I’m adding this site to my blog roll.
I’m sorry Melissa, that’s a very scary prognosis. Once RA starts attacking heart and lungs things can get very dire. I hope your doctors can find a way to get your disease under control. Steroids are a necessary evil, hideous side effects, and even so, still can’t get the inflammation under control. Hangin there. It’s a tough road. Wishing all the best for you Xx
Still waiting on all my test results… I can see them all on my patient portal but I don’t know what it all means.. One result says to retest for Lupus in 12 weeks… I’m scared, A newly wed, A Mom and a Grandma… I’m 53 and this all started in Dec 2015. At that time it was just in my left knee… I shrugged it off as a reaction to the amitriptyline that I was placed on for chronic migraines ( that all started in early 2015). I had just started a new very strenuous 12 hr shift job that is very demanding and stressful. In Jan 2016. I hurt all the time. I was told my immune system counts are very low. I’m still working 36 to 48 hrs a week and going to physical therapy 3 days a week.. I feel like breaking into tears all the time.. My vision changed all of a sudden and now have a prescription for glasses . in june my eyes were 20/20 now they are 20/70…Please any advice or ideas? I need help coping… I’m scared of loosing my JOB or going on disability,,,Oh I’m Melanie and my life was going GREAT.. SCARED NOW…
Hi Melanie, I’m sorry its taken me so long to respond. Please talk to your doctor and ask him/her to explain your test results. That’s their job! It can be hard to do, but it is so much better than not understanding what’s going on and feeling scared. Really makes me mad that doctors don’t spend the time to explain, even if things look ‘fine’ to them, they have no idea how this feels! I’m sorry you’re in so much pain. Is there any way you can do shorter shifts? That sounds unbearable. I wish I could help more. When you see your doctor and know more, please post back and tell me what he said? The bloodwork can hard to wade through, and sometimes doctors put far too much weight on the labwork. Finding a doctor who you trust and who will treat you as a partner and talk to you as such is the most important thing. Getting diagnosed is hard and scary, but once you know what you’re dealing with, you can start to get treatment, and fight it! Best to you xx
I was diagnosed a year ago…. The day before Thanksgiving. The worst thing for me is my hand pain and the exhaustion! I feel like I have the flu all the time. Achy and exhausted and then the joints kick in… It’s lovely. I worry so much about the future and what it will hold for me. It truly helps to know others understand. I have started to feel intense chest pain or tightness and ended up in the er thinking I was having a heart attack. Thankfully not! But it sure feels like it and no one has ever talked to me about it before. Thank you for sharing.
I’m very glad it wasn’t a heart attack and that you went to the ER to be sure. The first year is very hard, dealing with the pain, fatigue, and as you say the total uncertainty of the future. I hope you have a good rheumatologist on your side, and you have found some treatments that give you at least some relief. And good, supportive people around you to help you through. Hang in there Tenille and best to you xx
I found this website while trimying to figure out if I am in fact having a flare or if it’s my other pain symdrom I haven’t had a flare scince I was about eight it’s been in remmision for a few years now but I’m starting to get worried any advice?
Hi Xennia, I’d need to know a whole lot about what’s going on to help? If you’re not comfortable posting here publically, send me a message via the contact page, and we can talk more, and see if I can help. Take care xx
Hello I came across this information and thought I’d share… Pure CBD OIL relieves inflammation & joint pain, I personally use it and found it to be a huge relief for pain, I also give it to my parents for dementia and my sister for lupus flare ups… It helps us, I only hope it does the same for you! Get more information at http://www.mycbdspot.com
I’m surprised that I didn’t see anyone mention fevers that come with the flare ups? I have went to many doctors for 15 plus years with the following definitive diagnosis verified through various tests/biopsies: 1. Small fiber neuropathy (large strand variety which causes constant full body, head to toe numbness throughout the skin) 2. Degenerative spinal disorder (surgery replaced c4 through c6) 3. Bulging disk 4. Spinal stenosis 5. Hypothyroidism…..throughout all of these diagnosis, the only thing the doctors can agree on is that these things are being caused by an autoimmune disease. I was negative for the RA marker. However, my sister was positive for the marker. We have all the same symptoms with the constant joint pain in all of our joints, with the exception that mine began in my spine while hers began in the knees. I’ve had this going on nonstop, progressing throughout all these years without hope of improvement. I’ve tried lyrica, humira etc… to no avail. Although the pain is brutal, I can function mentally through the pain. The actual thing that puts me down and unable to function is randomly at night, I develop fevers and cannot function or fully awaken until they subside. While I’m conscious, I can “will” myself to function because my mind is strong. Yet when the fevers hit while I’m asleep, my mind and body refuse to cooperate until they are ready. That loss of control is the worst thing for me despite the never ending pain and fatigue. At least with the pain, I can mentally brace myself to deal with it, knowing it’ll always be there. But the fevers hit unexpectedly. Does anyone else have these symptoms? If so, have you found any way to help prevent them?
I forgot to include severe sleep apnea. If I sleep without the machine, I have between 30-60 apnea episodes per hour. With the machine, down to 5-10 episodes. The doctors also say autoimmune is the cause. But they haven’t been able to narrow down which autoimmune, or how many autoimmunes, I have. I had a full hysterectomy a few years ago as well. Nothing has helped.
Hi Victoria, greetings from the Netherlands!
Yes i do recognize the fever flares. Even when i “proofed” the flares with digital clinical thermometer in a Belgium hospital, they don’t believe me. They came up with a mercury thermometer . . . after a minimum of over ten minutes. I was so angry, stressed and misunderstood.
When i’m in pain, i’ve most of the times pretty big thermal differences at my skin. You can also see color changes from normal skin color to very light yellow, going to a gray darker yellow, to even a kind of dark red more purple (it’s hard to describe the colors, sorry) but by my relief most of the time just a kind of withe-yellow to grey-yellow (the lividity) Even then, when i proofed the differences, the ignored it :$
After a 6,5 hours operation i never get healthy again. I was shaking and vibrating from the coldness. The don’t belief me when i said it was pain.
Yes i’m a very strong minded person too.
When it pleases you call me a positive control freak. I control my body big time.
They gave up 5 blankets AND 2 thermal blankets. I went K.O. They thought i was asleep of the amnesia . . .
This was 2011. In the years after i was lucky to have a general practitioner / family doctor (which is very common over here) This doctor at least was honest and said he has never seen this combination of disabilities. He was open-minded and he allowed me to suggest treatments and/or medication. Off course he did NOT follow me blind. He investigate everything i said before he judged. Finally years later and i was also tested full scale by a (clinical) psychologist, all together we found the main trouble AND SOLUTION!
I worked over 14 hours a day and i love(d) it! I never gave up. Beside my (entrepreneurs) work, i was very active with a lot of things. Like going out for dinner till (very) late. I’m a scubediveinstructor. I was active in helping all kind of people (volunteer of just because i like to help others) This all was a big reason for staying ill. Later in time my doctor said to me “you have Rheumatism” and pragmatic as i am, i just asked him if it can be healed. “no”, “learn to live with it”. I’m never been to a rheumatologist, because they can label the rheumatism but also not heal it. I saw never a reason to go. I was busy enough 😉
Back to the solution.
Because of my personal strength i developed a mix of self hypnosis aka mind-fullness aka meditation. This was working very well, but it will fill your hole day 🙁 My doctor helped me with painkillers because i must work for income. After 3 years upscaling i use morphine sulfate and only when i’ve a (high) temperature or having a inflammation, i use paracetamol (acetaminophen).
Just only adjusting the quantity of morphine sulphate depending on the pain level and the things you must do on a day, is my daily life. There is no alternative (yet).
I do the regulation with a discretion. And off course i,ve tried everything else!
You name it: brufen’s, Codeine, all NSAID’s, codon/cotin’s. I’ve done that all before!
I’m talking in pain digits of 7,8 and 9’s ( i never use the 10, because nobody can know it’s maximum except when he/she was subject to long lasting torture). I pray you will never find out your ten.
I’m not a hero because i share this with the world. You don’t want what’s left of my “life”. I just hope i told you about your inner power, a force when you want to get somewhere it is possible. But do you want to pay the prise?
Finally 2 things to keep in mind strongly!
1)- If pain medication make you dizzy, sleepy or otherwise snoozy TELL YOUR DOCTOR! and ask him/her to prescribe a less strong medication. It should be a good idea when 1 medication is to strong you ask for multiple (long lasting) but less stronger medication instead.
2)- Even when we all know there is no solution for healing rheumatism people in general, we keep believing in “things”. Sometimes it is a kind of oil, sometimes it’s a herb, sometimes it comes out of the ocean, sometimes the believe in hugging a cactus. Whatever you do, what ever you try. Do it for over 6 weeks AT LEAST. Better is 3 months (13 weeks)! If i’ve done healthy (food) tests over 6 months. In one or two days or even a week you can’t be for sure if you see or think you see differences. Also tell your doctor about your tests. I don’t say “belief me it doesn’t work” find it out by yourself, spend the big bug and see with your own eyes or be strong, real strong. I mean in your mind and do the research and found out before you even start: it’s not worth a try.
Never buy medication like morphine sulphate or something similar with notification of your doctor.
I proofed it is NOT addicted to me, but i shared with you my possibilities of my mind.
I drive a car, operate (big) kitchen knifes etc. Remind i’m using it for over 3 almost 4 years now.(2017)
I do not use products like “Macrogol” after months of usage i rearranged all my food and with a military precision i know what i eat.
I don’t smoke. It sounds simple but do you know when you have a inflammation, smoking makes it worse for real! I doesn’t care if you want to smoke. Go ahead but be aware of the consequences.
Right now I’m really tired (more exhausted to be honest) just of typing this.
I’m going asleep again.
Be good to your body
Be good to others also strangers
My name is for real put gmail and com behind it and you can contact me if you have suggestions or questions. I’m just a person who has a lot of (healty) troubles. I’m NOT a doctor. Always think for yourself! Hopefully my English is readable enough apologize for some errors it’s not my native.
With a smile,
Bianca de Milo
P. S. I also see alot of comments concerning heart/chest pain. 20 years ago, before the spine began noticeable deterioration, my first real symptom, besides constant tightness and burning in my neck, was extreme fatigue. Suddenly, I couldn’t do a simple trip to the grocery store without feeling like I had literally ran and ran and ran. Total exhaustion. The doctors ran tests. Said it was either my thyroid or my heart. It was my heart (my thyroid issues didn’t appear through the lab tests until this year). At rest, my heartbeat stayed at 120 – 140 bpm. During the treadmill test, the doctor wanted my heartbeat to get to the target of 180. After it reached the target, it remained at 180 for several hours until they finally put me on toprol xl to lower my pulse rate. I remained on that medication for several years. I am off of it now. And due to the financial burden, stopped taking all meds except blood pressure and thyroid pills. I work full time, always have. Thankfully I’m in a position that when I can’t function, I’m able to take the day off. However, I can’t do that as often as I should because I simply can’t afford to be without pay. I also can’t afford the co-pay each time I go to the doctor and they send me to specialist after specialist. It’s a vicious cycle. I apologize for being so wordy and writing a book. This is the first time I’ve ever commented in a blog for this type of issue and it’s actually helping just to let it all out. Everyone here understands the frustration of looking healthy and being accused of “faking” or being dramatic. Everyone here also understands living with the knowledge that their bodies will never get better and suddenly cure itself (people, at least my coworkers, seem to think that the doctors should be able to make it go away and can’t seem to comprehend that it’s a lifelong invisible battle). Thank you, everyone, for sharing your experiences and allowing me to share my own.
I’m 27 and was fit healthy & in shape when last week my thumb started hurting at the middle joint on my right hand. It had been hurting for a few months but I didn’t think anything of it. Then suddenly it went red and has enlarged around the joint. It feels hard.
Over the last few days I feel like I’ve been getting sleepier and sleepier and suddenly all of my joints crack where they didn’t before. I feel weak and have a dull pain in my chest. My jaw aches & pain keeps moving around my body.
I also have a mild fever of 37.2. I had a blood test and thumb X-ray today and am waiting on results. I’m terrified and think it must be RA because what else could it be?!
I feel like I’m falling to pieces I’m struggling to cope with what might happen in the future. I was just about to move to Bali with my boyfriend in 2 days. We landed a dream job and were about to travel the world. Now I’m terrified I’ll be too ill to leave the country.
Feels like I’m going to lose everything. I’m not in huge amounts of pain but worried it’s affecting a lot of different areas. I feel so hopeless & lost, which is ridiculous because there’s no confirmed diagnosis but it’s weighing on me so much mentally.
It’s so helpful to read your comments but also scary because I’m afraid of what’s to come and how much I have to change.
I hope you all have as many pain free days as possible. X
Such a great post! It was really helpful to read about your experience with flares- I relate to every single one. Do you have any thoughts on medical marijuana? I am lucky to live in a state that has legalized it because it is the one thing that provides me with a modicum of relief. Thanks for all your time and effort- I look forward to reading more from you!!
Thanks much Wendy. I appreciate your kind words. Medical marijuana is legal and can be prescribed here in Australia, but the process is so difficult, and tied up in so much red tape, that most doctors don’t prescribe it. I would love to try it, I’ve heard from plenty of people that it helps. Not cures, but takes the edge off and improves quality of life. And that sounds pretty good to me! Best to you.
I am so look glad I found this link. The last week has been awful. I have had flares in my ankles, my feet, my everywhere before…this is the first one I have had that is my back
I have had typical back pain in spots of and on before but this is my entire back and chest. Feels like it is twisted and every muscle is pulled. Feels like I can’t breathe. Ended up at the ER Friday morning, with the holy crap I am having a heart attack. Nope heart is fine. I can handle all the others. They hurt and you keep going. This if its a flare, I hope I never have another one. Thanks for your post and I am glad to know I am not alone.
I went to the doctor today and used almost the exact wording about “my joints pulling apart” and the “constant ache that varies from mild to severe”, the “random flare ups and the occasional full body flare” and he said he’d never heard of joints feeling like they are pulling apart. I am so happy to have found your article and to not feel like some sort of raving hypochondriac. There isn’t anything quite like the sensation of waking up in the morning feeling like someone pounded nails into every joint in your body, sitting up and having dry heaves while your body literally shakes in pain, and that was just getting out of bed. Thankfully those are once a month or less and I usually live with the mild “eh, it isn’t quite comfortable, but it doesn’t actually hurt” with the random pulling joint pain doing just normal every-day tasks. Have you found a way to work out that helps prevent flare-ups or advice on working through one? I’m afraid to cause more damage, but if working through a flare won’t cause any additional harm, I need to start. I’ve gained about twenty pounds in the last two years since I’ve started having more frequent mini-flares and more severe flares.
I was diagnosed early, very early, with sero-negative RA. So even a decade on, none of my joints swell or look at all like anything is going on if you ignore the fact that my feet get ‘puffy’ as do my hands. I am grateful my Rheumatologist mostly believes me, and that I am mostly in constant stiffness and discomfort that I no longer even really feel as ‘pain’ (which is a problem because I miss when it escalates). This doesn’t change the fact that right around my luteal phase every month I explode into agony, or that right now my hip is frozen in agony and refracting down my knee for no reason whatsoever. My ribs are on fire (and my, I echo the relief in remembering that ribs have joints too), my elbows support no weight. And… I mostly have to wait it out and hope that this one will end.
Anyway, thank you for the description.