Rheumatoid Arthritis PAIN

[Judyp1203]

Is everyone with Rheumatoid Arthritis in some sort of pain everyday? Does anyone have a good day? Everything I do and everywhere I go I’m battling pain. I don’t go much more because it’s easier to stay home.

Thanks

Judy

[wishbone]

Yep, I certainly know that feeling!... I'm in constant varying degrees of sometimes debilitating pain. I try to get out once or twice a week and it so happens that today was one of those days, and I was/am feeling pretty grim so really had to force myself to go and meet friends for coffee. When I get back home not only has the pain increased but I'm exhausted as well. I think the last good day I had was when I was on enbrel approx 3 years ago. Since then it's been bad days and godawful days to be perfectly honest.

That said, I'm not a typical RA case, if there is such a thing, as I have other health issues that cause complications with medication, so my RA has not been well controlled since stopping enbrel. I should be trying a new med soon, so with luck, something I ain't had much of, may see an improvement. Just hope it works as things are certainly not getting any better for me, quite the reverse. Sorry I can't paint a rosier picture but that's an honest appraisal of how life is with me!

On a less negative note, I'm sure there'll be no shortage of folk contributing far more positive posts on their condition than I have.

[Judyp1203 in reply to wishbone]

Thtanks so much for esponding to my post. My heart goes out to you! I’m on my 3rd dose of enbrel. Hoping I get a little relief.

[wishbone in reply to Judyp1203]

It worked great for me...I was like a new man! Pity I had to stop taking it after just a few months.

Hope it really helps you

[summer32 in reply to wishbone]

I'm afraid so most of the time you get used to the background pain but flare pain is so debilitating

[wishbone in reply to summer32]

Sorry summer, I didn't mean to scare anyone.

I was having a bad day so let it all hang out so to speak. Also, I did indicate that I'm a bit of a problem case compared to many people with RA. Don't want to go into detail here. Enough to say that I have other chronic health conditions that cause complications with both taking meds and can also aggravate my RA. I can only take hydroxychloroquine, which has helped, but it's a mild drug and hasn't really controlled my RA. Plus it's been gradually losing it's effect.

Can't say that I've got used to the background pain, but have learned to live with it for the most part, and yes it is the flares that can be debilitating. Thankfully not every flare does this.

There is light at the end of the tunnel as I'm hoping to start a new type of med - baricitinib before too long. Hopefully that will make a new man of me once again like enbrel did!

Hope this eases your concerns a little.

[summer32 in reply to wishbone]

I have problems with a lot of the drugs too, still hop for a miracle, before I have to stop working completely due to ill health x

[wishbone in reply to summer32]

Hope a miracle happens for the both of us!

Best of luck to you.

[medway-lady]

I don't have any pain usually and am in remission. The odd blip and it is rare but life is normal I just take the medication and forget it.

[Autumnlouise in reply to medway-lady]

What meds are you taking now

[medway-lady in reply to Autumnlouise]

It was Lefludamide which is great but the Omeprazole taken with it to protect the tummy has damaged my kidneys. At the momentits under discussin between Renal and RA consultants whats next Its a real bummer as LEf was great.

[Downtime]

My pain is much less now than it used to be. I was diagnosed 3 years ago and I’m on Mxt but have to take slow release Brufen most days too. Its early days for you. I found it took months before things improved and in spite of everything I live a fairly normal life.

[Nicole2000]

Hello Judy,

I’ve had some level of pain for so long now I think my body probably won’t know itself if it stopped having pain. If I’m honest, the last time I was absolutely pain free I was under a general anaesthetic 🙂

Nx

[Nettac]

Yes I do have pain though less than six months ago. I'm not well controlled yet, but I'm sure things will get better.

I think it takes quite s bit of time, and jiggling about with meds before most folks feel better.

I'm sure things will improve for you soon. Keeping mobile really does help.

[cpetry]

Hi Judy! It's not been a year since they diagnosed me, so I'm not sure if this can change later on but the truth is every day I have pain ... more, less but I haven't had any pain free day since September.

So what I do is take one day at a time, so when I wake up I make a list of plans for the day and then if it's a good day I try to follow my list (still trying to figure out the limit not to overdo it) and if it's a bad one I leave it for the following day.

Actually, yesterday I was just wondering if recovering means that I won't have any pain nor fatigue or only that my joints are not compromised. I'm planning on asking my doctor on the next visit. Because at some point I think that we put a lot of pressure on ourselves to feel "normal" again and maybe that won't be the case and we have to change our mindsets.

Have a good day!

[Hidden in reply to cpetry]

I do hope you get an answer when you speak do your doctor and please post it!

[Fra22-57]

Yes I am but my rheumatologist is not interested. I am on meds but not well managed n another rheumatologist said I needed extra.whatever try do with hands is either impossible or painful. Always wake several times n night in pain n longer stay there more crippled I get so get up real early.I like to get out of house with my husbands support as feel bit of freedom n takes my mind of it but hey try do too much n then agony again for day or two.

I think am lot better than used to be but no two days are same so try do what I can only good day.We are all on different meds and our bodies accept some but reject others.biologics didn't take any effect for me and ended up more disabled after trying last one.

Wish u pain free days Judy

[SnooW]

I think it depends on how quickly you were diagnosed and onto successful treatment. If something works for you and stops the progress of the disease straight off I think you have a good chance of being without pain. If however, joint damage has already occurred, then I believe these joints can always flare and be painful as there is no reversing the damage. But once onto a suitable med, further damage to any other joints will hopefully not occur/slow down. That's how I understand it anyhow. So the pain comes from joints already damaged. Hope that makes sense.

[helenlw7]

I know just how you feel! I was diagnosed with RA Iin 2005 and I have been in pain every day since then. The degree of pain varies from niggling (not very often) to a level that makes going out impossible. In saying that, I am on a cocktail of etanercept and mtx with a few other drugs, and this makes living a fairly normal life possible most days, but in the background there’s always pain. Even now when all I’m doing is sitting writing this, I have pain in my neck, shoulders, wrists and fingers. If I could have one wish I would love a pain free day!

After my moan, being more positive, life is much better now than it was ten years ago. I make myself go out every day - dog walking, a bit of shopping, meet friends, but I have to make sure I don’t do too much each week.

[BoneyC]

I have pain virtually all the time in mutiple joints. I put this down to having had the disease since childhood (47 years) and the drug availability then was not as good as it is now. I take codeine at night to knock me out. Having seen my rheumatologist last week, in his letter he describes my RA as:-

1. RF-, ACPA-, severely erosive

2. degenerative joint disease

I think he means I have osteo as well as RA which probably explains why I have pain.

[rosie1928]

Hi Judy. Yes it does get better. Or rather I am used to the constant burning in my knees and hips.I was very ill 23 yr ago....found it hard to go out. Laying down prone for half an hour is a good revival measure with just one pillow. I use 20 min meditation found on utube for p.ain. it reduces it by half at least. Dont despair...you will find ways to cope. The more you know the more you will cope . Pace yourself and enjoy those windows of wellness. My windows last aboutb2 hours and then I rest. Eva

[Uga35570]

Hi Judy I too rarely have a time without pain. I have mxt injection once a week and folic acid other days. Recently I am trying cbd oil recommended by my son who has recently had 2 major back ops. He wanted to stop morphine codeine etc post op and is totally pleased with it. It takes a while so i have not seen any difference yet but am trying to be patient and positive. Maybe its worth a try for you btw it doesn't taste great but what is that against continual pain!? Good luck chin up !

[cpetry in reply to Uga35570]

I started cbd oil too, but still no effect. It might be what you say that it takes a while..

For taste, I take the oil and immediately a tasty tangerine hard candy hahaha --low sugar of course

[thelmar in reply to cpetry]

I have been taking CBD since Christmas and it has made a huge difference to my pain. Unfortunately there seem to be many different strengths and suppliers are not allowed to give advice. However I discovered CBD Consumers UK/EU on Facebook and there is a wealth of help and advice on there. By the way my rheumatologist, orthopaedic consultant, GP and anaesthetist have all given me the ok to continue with it.

[Judyp1203 in reply to thelmar]

I just ordered some!

[Hidden]

Sorry to say, but I am in pain virtually all over all the time. Having said that, I also have OA, fibromyalgia, degenerative disc disease and gout and a lot of other health problems as well. Sometimes, I wake up in the morning and wonder just how I am going to get through another day of pain. I am also the same about going out. I love going out and visiting places and I love holidays but I am so exhausted after them that I sometimes wonder if it is worth it. Two years ago, we had a wonderful holiday in Florida, but I started a very bad flare before we went and I was also exhausted from getting all the packing done for the holiday and making sure I had all my medication with me. During the holiday I was in tremendous pain and when we came back I struggled to sit comfortably on the plane. It took me about three months to recover from the holiday.

[Judyp1203 in reply to Hidden]

I also have fibromyalgia, had 3 cervical spine surgeries, thumb arthritis surgery and OA. I have suffered in some sort of pain for many many years. Probably since I was 40. When this burning shoulder and hip pain started, I thought now what? Now I am retired and I guess I’ll spend the rest of my life in pain.

[Lorraine_NRAS]

Hi I hope the information on the following links may be of help, Judy. nras.org.uk/managing-the-pa...

britishpainsociety.org/peop...

britishpainsociety.org/brit...

I very much hope that things start to improve for you very soon.

[dbestdeb]

I have what I call normal pain every day. My doctor laughs at the term, but to me it’s real. Just the morning pain when I first get up and the pain and stiffness whenever I move after having sat for a few minutes. Nothing throbbing or sharp that requires pain meds but always there. Enbrel has taken the worst symptoms away and made life worth living again for me. There is hope.

[lovekittys]

I was diagnosed with severe RA in 2015, I do have some kind of pain every day but it is not anything I can't handle. The flares make it hard to deal with but I have a friend who has psoriatic arthritis (which causes her a lot of pain and has sores that are also painful) and multiple other things that cause her a lot of pain and I asked her how she does it every day. She works 3 jobs, most of them from home and raises her son and I was seeing her out and about and she told me (which is what I needed at the time) she said you can stay home and feel sorry for yourself (which was really hard for me to hear, because I was always fatigued and in pain) or go out and enjoy life the best that you can. Knowing that you will probably pay for it the next day, but at least you have something to think about that you enjoyed. There will be days that you just can't do things but when you can enjoy every minute of it. She made me realize that life as I knew it wasn't over, I was just going to have to pick and choose what I could do and trust me there are days I just don't want to do anything (working full time takes a lot out of me) so during the week I don't do much. I know I won't ever beat it but hoping and praying for remission. I hope you feel better and know sometimes it is okay to feel sorry for yourself, what we have sucks and it is depressing but be careful not to wallow in it.

[Gnarli]

It is possible to be pain free and I know this from personal experience. When I swapped from 25mg methotrexate tablets to 25mg injections I felt better almost straight away. For two months just one paracetamol a day was enough to be pain free and the energy levels started to rise. Unfortunately, since mid January symptoms have been gradually building up again. I firmly believe that, once the right combination of meds are found for me, life will improve again. Huge hugs

J

[Needforname in reply to Gnarli]

Hey Gnarli. That's interesting. I've wondered why my rheumatologists haven't recommended MTX injections. I've been on MTX, Enbrel injections, LDN, Prednisone, and now Sulfasalizine, MTX and Symponi Aria infusions. I've been in chronic pain for years, was diagnosed 2 years ago, and nothing has helped. Massive chronic pain every day. I was wondering how many different drugs you tried before experiencing relief with the MTX injections. Thanks. Hope you find another medication that works for you again.

[Gnarli in reply to Needforname]

Hi Needforname. I'm 17 months in from dx although the pain and swelling had been happening on and off for over 20 years before. MTX tablets were first DMARD with sulpha added in (lasted 3 weeks) then hydroxy (lasted 5 days). Swapped to injections because of awful nausea and I felt better but for only 2 months. There have been about 4 courses of pred which had variable success in controlling things. Lovely rheumy has told me that I will not get biologics due to having too many infections so what happens next I don't know. Perhaps you should discuss a swap to metoject at your next rheumy appointment. Wishing you well

J

[Needforname in reply to Gnarli]

Thank you for sharing. I will ask about MTX injections. Best of luck with your path forward.

[AgedCrone]

Hi Judy......yes does seem like an up hill climb, & getting settled on the right meds can take an awfully long time. But you will get there.

In the meantime try not to stress too much....if you need to rest ...do.

Don't worry about keeping up with the crowd & then paying for it afterwards..Look after you.

Make a friend of your rheumy nurse...you will probably see her more often than your rheumatologist....& she has heard every moan in the book& really will know which meds might help you.

I spent 7 blissful years on Mtx,& really thought my problems were over. Been on RTX now since 2016 & once again hardly any pain or other symlptoms. I do have a nasty rash on my torso which is being investigated...but it doesn't hurt & it doesn't itch... it does look ''Orrible" but I'll put up with it for now as I'm painfree......& it's being investigated.

But I'm sure it will be sorted soon.....so I am just ignoring it & not stressing (Yet?)...so talk to your rheumy nurse ASAP& see what she recommends.

[jessquilts]

Hi Judy,

I was diagnosed about 2.5 years ago and while I do have pain everyday, it varies. Some days are better than others. I am on Mtx and just upped the dose a few weeks ago. However, I had to stop taking it in preparation for an upcoming surgery. I'll be going back to it after surgery. I can say that I questioned whether Mtx was doing me much good, until I had to stop taking it. Now in the midst of full blown drug free pain.....WOW! I had no idea how much the medication was helping. I am not having a flare, but the damage that is already done and pain is pretty intense at times. After a week of travel, I tailspun into being sick and super sore and have had to come to terms with the reality that if I'm going to tax my body then I'm going to pay for it later. That doesn't mean I will let this stop me, but planning for a couple of days of rest after being very active, or spacing out travel so that there is a rest day or two in the middle is what is going to work out best.

I am hoping that the removal of some hardware (upcoming surgery) that I'm allergic to will help take down some of the inflammation overall and that someday I can be relatively pain free.

[Needforname]

I share your pain Judyp1203. Been on numerous RA meds and nothing works. Constant pain every day for years. Nothing helps. I never leave the house. Luckily I work from home but it's unbearable most days, but have no choice because nobody else is going to pay the bills. I hope there is a med out there that will work for you. I know it seems like that day will never come.

[LunaParry]

I was diagnosed 2 years ago and although the pain is not debilitating, it's constant - every single day. I work and I have a three years old son, which it's exhausting. The constant pain and fatigue made me feel really down at some point, so I was referred for CBT (cognitive behavioural therapy), with a mental health specialist working with patients with chronic conditions. Even though the pain is still there, what I've learned with the therapy has helped me to cope better with it. I'm not feeling down and negative anymore. I'm not saying this is the solution, but as a complementary activity to your medicines, it helps to manage yourself through your daily life. I had really bad days when I didn't want to go out of bed, now I look bad and I'm so glad that I did the CBT.