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How much longer 😱

Wow I don't usually let anything get to me but the last 2 weeks have been horrendous. In so much pain . I can't use either of my hands they're so painful and still got the worst pain I've ever experienced in my chest now for the last 7 month . I've had full MRI and due for chest MRI this Thursday to see if I qualify for biologics. I'm also due to start sulphazalazine on Monday . I hate taking all these drugs and keep myself active as possible . Can anyone give me any tips for pain relief and sleeping they find useful themselves ? I'd be so great full .

Thankyou

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U could ask ur gp or rheaumtoglist for amitrypline their known as a muscle relaxing drug but help u sleep that's what I take hope u get some relief soon amy

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Hi Amy I can't take them they don't do anything for me but thanks for the reply

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I take amitripoline but nothing really works for me sit up most nights watching tv and dozing 😢, seeing my gp Monday to see if I can try something else

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That's what I'm like or when I go bed I have 6 pillows and even then can't sleep because of the constant pain . Feel like cutting my hands off .

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I feel for you - and I know how you feel! I can hardly type today, my fingers all swollen, red and the tips seem to have little daggers pricking them. I think the cold weather doesn't help.

My solution (it helps a bit) is to plunge my whole body into a hot Epsom Salts bath. I find that, though it doesn't actually get rid of the pain, it relaxes the body and makes everything more bearable.

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That's what I do everyday. Yes it does relax you but within an hour the pain back . I feel like my hands are broke I've just rang the nurses see if I can get a steroid injection even though I've had quite a lot latey

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Naproxen 750mg used to work for me but I had to stop it because of gastritis.

My pain is usually manageable (since I gave up gluten foods) but at the moment my hands are bad. The weather affects everything, but activities do too. I've been knitting and my fingers don't seem to like it!

Hope you find something that works for you

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I've been taking Naproxen 500mg but I have colitis so make me flare up which is last thing in need on top of all this . I start sulfasalazine in the morning and going for a steroid injections so I was gonna say fingers crossed but can't even move them lol .... good luck hope ur better soon x

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Poor you, poor us! Sulfasalazine worked well for my sister (wh also has RA) - hope it does for you!

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Thankyou you too

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It is trying diff meds to see wot suits you maybe tryed them all .trazadone for sleep .pain naoroxen dyhydracodine.pregablin and fentynalpatch.paracetomel (helps other pain relief work) meditation.p.s.have you been on a chronic pain course

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I take naproxen but I also have colitis so anti inflammatories not good for me . I take zapain for the painkiller and I'm currently only taking 10mg MTX as won't give me more because of side effects I'm having so starting me on sulphazalazine ( prob spelt this wrong ) on Monday as I've another scan to go to see if I qualify for biologics... it's driving me mad as always been so active and I feel like a 90yr old 😱( sorry to moan but people on here know what each other are going through )

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I have been on sulfasalazine for a month now with good results. It might even help with your colitis. Unfortunately, it has also caused insomnia for me, but it might not for you. I read a post on here from someone who said to take the second dose of sulfasalazine earlier in the day. I tried it and that is really helping! I'm still not sleeping normally, but much better. I wish I had some words of wisdom regarding your pain. The people on this forum have been such a help to me and I am positive there will be some suggestions that will work for you.

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Oops, almost 2 months.

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Thankyou Sharon I will certainly do the same . I've not slept properly for over 7 months mainly due to my chest or pain like I'm having electric shocks . This site is amazing I can't believe how supportive everyone is and because we're all in the same boat we understand each other ... thankyou 🌹

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I it is hard to get the right answers .even tweets change times etc little things may help if no .plenty rest

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I'm just starting imipramine. It's a tricyclic drug ( same class as amitriptyline). I can't tolerate amitriptyline, hence trying this.

Only started it last night, so a bit early to say. I'll let you know.

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That be great thankyou

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Jayne you shouldnt be in so much pain you can't sleep: reminds me of when mine first started. Can't rheumatology give you long lasting steroid shot? Even when you start Sulfa it's going to take a while to kick in. Failing that i got tramadol from G P s, nothing else stopped pain: i know its not ideal long term but ...

X

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I've had way too many steroids as they were going to fuse my wrist so tried 5 steroid injections under ultrasound. I've also had 7 steroid injections all in 10 months to a stage were it's bruising my skin at the slightest touch . I've gone through colitis , stroke, skin cancer all in the last 18yrs and always pick myself up and get on with life but this RA has taken over my life to a stage I don't have a life only an existence I feel . It's affecting everything. I feel like jumping on a plane and not coming back .... sorry but this doesn't even sound like me as I'm such a positive person . Just can't see any improvement atall . My chest is agony and my hands are in splints they're that sore . God knows how people have gone through years of this .... I take my hat off to you all

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I'm so sorry it's that bad, 18 years of that, no wonder, can you see GP emergency appt or something and say how you feel? X

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I'm gonna have this chest MRI Thursday and hopefully then I can get sorted .... thankyou Kerena

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I had my right wrist fused with a Stanley pin along with removal of distal ulna bone. I had been in agony and now have no pain. . . . . ?

Good luck 🤞

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Woww that sounds painful...

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Yes, but worth it long term

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They were gonna do it 13 month ago but I didn't want at the time but if these new meds don't sort it it's something I will consider . Thankyou

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I was sent to see hand specialist with a view to removing the distal ulna joint but when they x-rayed my hands/wrists they were in such a state that fusion was the only real option. Good luck. X

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I second asking rheumy about a steroid shot. They don't work for everyone apparently, but gave me great relief that lasted a couple of weeks the few times I was given a shot.

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Hi Jayne,

I normally take 2 co-codamol 30/500. That’s enough for me to get a bit of pain relief and be knocked out for the night. Although my body is very sensitive to meds so might not work for you. Unfortunately I’m in the same boat as you with my hands and wrists and can’t take my co-codamol because of Methotrexate that buggered my liver up. You could also try a steroid injection for the pain but it might not work, I had one 2 days ago and it did nothing...

Best of luck! 😊

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Thankyou for your kind words really appreciate all your lovely comments ... i find I don't say anything to anyone about how I'm feeling apart from here as we're all in the same boat so can relate to each other .

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Yep, I have felt exactly the same over the last week, everything is so painful and I don’t know whether to cry, laugh or have a mental breakdown lol. You should talk to people about how you feel, it helps to have a whinge from time to time and just air it out.

Take care. 😊

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Rrr thankyou x

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Cannabis might be of benefit to you.

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I've tried the cbd oil but was violently sick x

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JayneN so sorry to hear you’re in such pain. Do you have a rheumatologist you can see? They’re usually better able to help you with your RA than a GP. My rheumatologist is great tracking my condition. However lately both my legs have been in so much pain Ive had to take a couple of aleve before going to bed at night and in the mornings to get me through the day. One night pain was so bad I took a 600 mg Ibuprofen. It helped somewhat but I still have pain. Plus my fingers swell up. I’ve been in various stage of flare up for the last 2 years. I’ll see my rheumatologist in April regarding the continued leg pain. I hope something else can be done. I take methotrexate once per week, but something else may be causing leg pain. Anyway I hope you will be able to get the help tou need.

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Thankyou... it's awful isn't it being in pain constantly. Hope you get better soon

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So sad to read about your pain. It's hard to understand in this modern day that pain treatment still seems to be so hit and miss.

My wife has been suffering with RA since 2012 and it's hard to see her trying to live with it.

These are the things she tries:

TENs machine. (Uses small sticky electrode pads that are placed across where the pain is.) It sends a signal between the pads which is felt as a tingling sensation. The idea is it blocks pain reception.

Electric heat pads:. Like a very small electric blanket which she uses at night.

Microwavable heat pads:

Her prescription also includes:

Algesal Cream:. Massaged into the skin around the pain

Zapain tablets: For when it's really bad

I hope there is something on this thread that you ultimately find helpful to you..

All the best

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Thankyou for your advice . I've tried heat patches and ice packs. I have been taking zapain for over 12 yrs now as I have colitis . Think I'm

Immune now. I won't take anything that makes me spaced out as had bad experience in past. Fingers crossed I can get it sorted ... been up

All night again and can't move my hands it feels like I'm being electrocuted.

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I dont know if this would be of help , ive a slipped disc and i was in really severe pain . I spoke to rheumy Nurse and told i was having difficulty with pain management as anti inflammatories upset my stomach, she suggested etoricaxib which is easier on stomach . I tried it and found I could tolerate it quite well , however i was in so much pain it wasn’t enough and i had to take tramadol as well . For some reason it doesn’t seem to be mentioned much but maybe worth looking at ??? Best wishes, i hope you can get things under control as constant pain wears you down 💐💐

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Thankyou for your lovely advice . I can't take tramadol as experienced a real bad reaction to it in the past . I'm taking zapain but think it's not enough . I'm gonna go doctors in morning as this pain is getting unbearable and fir me to say that it's bad as I have a very high pain threshold. 🌹

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Hello There, so sorry to hear you’re in so much pain.

I was also in chronic pain when first diagnosed and nothing seemed to work initially. Theses are the things that finally worked for me though:

Progabalon - literally overnight relief

Myo Fascial release massage - amazing relief, last a few days but having regular therapy of this has definitely helped.

I also slipped a disc in my neck and got 3 days of diazepam-really helped me get back into a headspace of trying to relax, not sure if that makes sense?

Hope this helps xxx

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Hi Jayne

I’ve had the most terrible flare since having a zoledronic acid in Nov, has affected both wrists and other joints. I am in Cimzia for around last 2 years which is a biological anti TNF, so that hasn’t stopped my flare and terrible pain. What I wanted to say is I don’t think you should have to wait for a chest MRI to be given the biological med (I just had to have a chest X-ray) and it sounds that your RA is definitely bad enough to be prescribed. With regards to pain naproxen doesn’t touch mine. I used to have 75mg of slow release voltorol tabs which worked well for me but apparently they no longer manufacture them😢. Co COD does work for me but I have to take so much I can’t function on a day to day level and I have to work. At the moment this disease is working it’s way around all of my joints and I feel so sorry for you as I know how you feel, if it wasn’t for my family I doubt I would be writing this😢. Just please fight for the drugs you want and don’t be fobbed off. I am sure you will find some med that works for you eventually, just hang in there. Sometimes I take pain relief and a couple of glasses of red wine and sleep really well (my Rhumi thought I was joking when I told her!).

Let us all know how it goes and if you get the biological, wish you a good nights sleep very soon 😊

Remember, you are not alone...

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Hi Carol in, just to let you know you can get other slow release anti Inflamatory tabs. I used to use indomethicine mod release which they stopped making and am now on diclomax 75mg modified release which work just as well. I couldn't manage without them.

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What are these slow release tabs ? I take 500mg of naproxen twice a day but don't seem to be doing anything.

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Hi Jayne, they are anti Inflamatories that work over a long period to release their effectiveness. Mine give a boost at bedtime, work through until about 2:30 then give another boost and then one about 7:00 when it's time to get up. I sometimes wake in the night about 2am but not very often. I find they work better than naproxen for me.

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Thanx I will ask about these .... much appreciated x

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Thankyou Caroline .... glad someone knows how I feel although I wouldn't wish this on anyone . I had private health up until September last year and the care I got was second to none . No waiting for appointments or scans by since I'm now through the NHS I feel like u spend all my time waiting around . I think what's doing he is that I always had such an active lifestyle and was a workaholic I never stopped to a stage now we're I've not left my home for the last 8 days. I feel like a recluse . I live on my own which at times is scary if anything should happen . I just need get this MRI out of the way and hopefully see a light at the end of the tunnel .... hope you also get better soon x

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I am trying medipen, it does seem to help me. Especially with my grumpiness according to the boss lady. Sorry your in so much pain, xx

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What's medipen ?

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Its refined cannabis oil with the HTC removed, if you put medipen into your search engine, should take you to their page, they are based in Cardiff. I was put onto by a friend who has MS . XXX if you need anything else just ask x

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Oh so it's the CBDoil ? I tried this but made me really sick but I will certainly look at this .... many thanks

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Jayne, it must be horrific. I have just been diagnosed but am on pregabalin & nortriptyline at night to sort out the nerve pain. I have recently been off work with a very bad flare. Luckily, at my first appt my rheumatologist gave me a systemic steroid shot to see what happened. I felt the best I have in years. I was allowed a second shot when the first one wore off as I really wasn’t coping. However, at my second appt, I was put on sulfasalazine and that, with my steroid shot have certainly helped. I’m hoping to get into biologics when I see the rheumatologist next in May but, for the moment, I seem ok. I also use tramadol slow-release (which I know you can’t take) for work. However, if I were you I would get myself referred to pain management and see if they can help you in the short term. They were the ones who put me on pregabalin which allows me to sleep.

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I was on pregabs but was horrendously ill . I'm starting sulphazalazine tomorrow along with my MTX but will take time to get into my system. I'm having another MRI Thursday as they're worried about the chest pain so fingers crossed they get me on biologics . Don't know what else to do tbh ..... thankyou for your great advice much appreciated x

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Jayne, I got chest pain with mtx, but it stopped shortly after stopping mtx.

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I've had this since I started on MYX tablets in august . I was fine before that . They thought it was costs spondylitis or something like that but now are not sure hence the MRI . I can't breathe in I can't caugh and if I sneeze 😱omg it kills me . It's like having knives in my chest and the feeling it's being ripped out is alls I can describe it as . I'm hoping I can stop the MTX injections now as too many side effects from nausea, mouth ulcers, hair loss it's like my health has done a 360 degree turn . I've been told my immune system is attacking all my joints and causing RA and other stuff . Just wish it would get sorted ... I feel a right moaner x

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The way you described your chest pain sounds identical to what I experienced 2 years ago. So so incredibly painful to breath, cough, sniff. I would absolutely dread sneezing as I knew the pain that came with it would send me through the roof! I really feel for you. It's awful. I couldn't lie down and barely slept for months. I was diagnosed with Costochondritis initially but the pain and swelling also affected my spine and knees, and was diagnosed with Ankylosing Spondylitis. Starting Biologics was a life changer for me, it gave me my life back. I hope that they get your MRI done soon, and come up with a plan to manage your pain better. Sorry, would've replied to your post earlier, but I've not looked at the site for a few days. Been too busy with the "Best from the East" - picking up wet snowy clothes and wellies off the floor and mopping up puddles of water from melting snow!! The kids have loved it, but I've had enough of it now! Time to get back to normality! Take care. Mhairi.

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Thats exactly what I'm experiencing ATM . My knees and spine . Sneezing is unbearable is like someone slicing my chest with knives . I can't wait to start the biologics as nothing else is working . The worst thing for me is I'm fiercely independent and worked hard all my life and never relied on anyone for anything and now I've been off work for 15 months I'm really struggling with Day to day life . Just trying to get dressed is so stressful it takes that long . It's my hands are affected so struggling to do anything but onwards and upwards and hopefully they work . Thankyou do much for your very motivating reply .... much appreciated thankyou

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I've just read up on this and all my symptoms sound like this from the pain in my feet to my chest and hands . It says it's linked to IBD . I have ulcerative colitis for the last 18 yrs but had it under control for over 4 yrs then I had a bad fall and damaged my back and sciatic nerve in Nov 2016 then 3 weeks later all this happened.

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That sounds awful JayneN. You've been through so much. I really feel for those of you who have this constant pain in your hands. It must be so debilitating.

I am also a very fiercely independent person, and find it massively frustrating that I can't do everything that I used to. Don't know about you, but it doesn't sit comfortably with me to ask for help. I'm more likely to power on through and pay for it later! I really should learn from experience! Although I am getting better at that. Take care. x

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Jayne, it took 2 days for me to feel the effects so don’t write it off too soon!

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I won't and thankyou

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Hi Jayne Was diagnosed R.A. 15 years ago for the last 2 years I have been buying capsules containing Serrapeptase and have had a lot of relief from pain without side effects. They are classed as nutraceuticals i.e. nutritional supplements that have a powerful anti- inflammatory activity. Take sometime to build up in your system but well worth persevering with. Best to check out whether they might suit you but do not expect Doctors to know much about them as they are obviously outside the N.I.C.E. system Good luck with your research

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Thankyou I will read up on this tbh anything will help ATM as in so much pain .

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Thank you, I have never heard of this. Are there other supplements you take that help? I take a lot and I'm still struggling with pain, can't take nsaids, do not want to take stronger meds. Thanks!

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Hi Yes I do take digestive enzymes, curcumin x 4000 capsules, and probiotics as well as multi- vit/mineral called Active Life and I also use Ancient Minerals Magnesium Oil. Hope this helps! The benefit for me is no side effects except going to the loo a bit more !

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I didn't see what your illness was nor the meds you are on but I'm sorry you're dealing with this. I have RA and primarily Methotrexate and Prednisone. Can't sleep. Frozen Shoulder and, chest pains that feel like a heart attack. Plus, just for fun, fell and broke a couple of ribs. The chest Pains had me in and out of the ER for about two years... couldn't find anything! Finally, I was diagnosed with Colegeans Disease, somehow connected with RA. It eats away at healthy cartilage, especially in the chest and ribs. Now, I dicovered my hip issues are also related to RA. I am now using medical marijuana and CBD oils. They take out or minimize the THC, the stuff that makes you stoned. It works with my pain very well plus it helps keep me asleep. I now get 3-5 hours of solid sleep as opposed to 2-5 hours of broken sleep. Worth a try.

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Omg u haven't half suffered 😪I know exactly what u mean by the feeling of having a heart attack it's so scary . I've just come back from the hospital had yet another steroid injection. Been awake all night in agony especially with my hands I can't even touch them they're that bad ... not good this RA . I tried CBD oil few months ago it was amazing my pain went within 2 days so I finally thought d found a cure . Then day 4 I was violently sick and was told to stop taking it . I wish I had a miracle cure to cure us all .

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I'm not clear what is meant by the sentence "haven't half suffered?" Also, who told you to stop taking it, your RA doctor? Have you been cleared from Colegeans Disease, the disease that mimics a heart attack except to pain lasts an hour instead of 3-5 minutes?

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Sorry. The term means u have been through a lot . The RA consultant thought it could be Costochondritis but I'm having MRI on Thursday to investigate more as they now don't think it is what they think .

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Oh, never heard that. It wouldn't hurt to throw the idea out about the Colegeans disease. My doc is a head professor at USC and a world known oncolodist but it stumped him for a while. Yeah, unfortunately I have a lot going on. Doc calls me his pet project. Lol. Plus, I just turned 60 so I have all the other medical crap that goes along with that. RA is no picnic. It drives me nuts when people think its "just" about achy joints! If I had endless money, I would stay on the path of acupuncture. That was incredible as far as my RA, able to go up and down stairs without pulling myself with the rail, my skin went back to normal, less pain, etc. It took about 6 weeks before I saw those kind of results but insurance didn't cover it. At $70 a visit, 2-3 visits a week out of pocket, I just couldn't keep it up. My wife is kinda a health nut so we eliminated or drastically reduced intake of breads with wheat and flour, sugars, alcohol, night shade vegetables like tomatoes and eggplants, carbs in general... All these things create inflammation in our body which causes our pain. The reduction has helped with the pain along with CBD and medical MJ. Nothing yet is a "cure" so in the interim I have learned to embrace the pain, endure the pain and still love through the pain. Life is a series of things we have to get over, under, around and through, eh?

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I've changed my diet I don't drink alcohol because of the MTX but I'm definitely going to mention Colegeans to my Specialist. Thankyou for your words and advice . Much appreciated.

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Rembrandt2nd, kindly consider suggesting your ‘health nut’ wife ☺️ closely examine: healthunlocked.com/cure-art... 😌 🙏 🍀 🌺 🌞 [If she grasps it, understands the sense of it, she may be well attuned to help guide you though it. 👍👍 Ditto for your USC world-known oncologist 👨‍⚕️ . ]

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Short/ Immediate-term 👉 Turmeric + Black Pepper, Ginger, etc. (kindly note "☠️☠️☠️ Note": healthunlocked.com/cure-art... )

Long-term 👉 Experientially Learning (‘Trial & Error’) Life Changes ( healthunlocked.com/cure-art... )

Sleep 👉 Sleep ‘Hygiene’, Relaxation/ Meditation, etc ( healthunlocked.com/cure-art... , healthunlocked.com/nras/pos... )

Very best wishes for speedy relief, JayneN. 😌 🙏 🍀 🌺 🌞

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Thanx Kai much appreciated 😊

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🙏 😌

Aside: Taking the long, ‘hard road’ of improving/ healing at the root has cumulative payoffs as you go along ( healthunlocked.com/nras/pos... , healthunlocked.com/nras/pos... ) over time, JayneN. 😌 Nothing that a short-term ‘fix’ (temporary ‘band aid’) can ever come close to. 😯 🤔 ]

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Awww thankyou and yes I don't ask anyone for anything unless I'm really desperate tbh but doesn't do any good as I end up in more pain . Wishing u well 🌹

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