Coping with horrible pain ...

pameladscu

Hello,

I have arthritis all over my body but still haven’t been diagnosed with an specific illness. My rheumatologist just said poliarthitis and that he would need to see my MRI scan to be able to diagnose me. I currently take arcoxia, amithriptyline and co-codomal. These do not seem to be working. I’m never not in pain. My arms get so bad sometimes that it feels like someone is trying to rip them off of my body. My ankles swell up if I’m out of the house for more then 30 mins. I’m constantly exhausted. I have a small son and it pains me that I have to put the TV on because I can’t handle playing with him. My back hurts so bad that I can’t lie down, stand up or sit up without tossing from side to side. My lnees and hands also hurt so bad I have to try and keep them still. All this is starting to affect my mood. I just got a new job but will now have to quit due to the sheer amount of pain I’m in. I really tried to be positive but it’s starting to take a toll on me.

Please, does anyone have advice on pain management that is not medication?

Any help will be greatly appreciated.

[Deleted User]

Hello

Welcome to the forum. I am one of the moderation team, we all have one or more of the arthritis 'hangers ons' or look after family members with the same.

The members on this forum are very friendly, helpful, will emphasis with you, offer you advice and suggestions that they feel will help you and will support you.

At the top of the forum you will see some tabs, which when pressed will take you to different subjects that Arthritis Care produce to help you with your arthritis.

Our website is: www.arthritiscare.org.uk
and also the Arthritis Research UK website is www.arthritisresearch.org.uk

I hope you will find help and support on hear.
I look forward to seeing your posts in the coming weeks.

Best wishes
ChrisK

dreamdaisy

Hello, I am so sorry top read your distress, I can empathise because I am in the same situation. I began my auto-immune arthritis (psoriatic, PsA) back in 1997 but no medication to control it until 2002. Osteoarthritis was diagnosed in 2011 so I have a creaky foot in both camps.

I regard GP prescribed pain relief as necessary because there is nothing else that works - by work I mean dulling enough of the sharper edges to enable me to get on. Over the years I have tried some of the stronger stuff but that took me away from the pain rather than the opposite and I soon learned I preferred to be in pain but clear-headed. I get by on four 30/500 co-codamol per day which leaves me room to increase when things worsen. I use distraction as my main method of pain relief, ignoring it reduces it whereas focusing on in increases its presence. Plenty of rest is also helpful but I am fortunate in that I am older than you so retired and being in my 22nd year of the dross means I have plenty of experience in dealing with matters. Constant pain is demoralising, debilitating, depressing and very hard for those not in it to understand. There are around three hundred kinds of auto-immune inflammatory conditions but the medication is common, I can understand why your rheumatologist is holding fire but that is not helpful for you.

For the PsA I take methotrexate and humira. What are your blood tests showing in terms of inflammation levels? Auto-immune inflammation affects the whole body whereas OA inflammation is localised to the affected joint or joints. I began with one affected joint, now it's around forty; life became easier once being pain-free stopped being an option. Pain is part-and-parcel of arthritis, learning to live with it is far from easy. DD

BettyMac

Hi pameladscu

I’m so sorry you’re in so much pain.

I know you’re trying to run a family and keep a job going and that’s not easy, even without the pain.

Getting a diagnosis and adequate treatment always seems to take such a long time and when you’re in pain, stressed and sleep deprived it can be deeply depressing.

Can I suggest that you keep a diary listing every area that hurts, every swollen area, sleep disturbance, medicines taken, time off work etc, etc.
Keep entries short - but note everything that’s not right.
You can use the notes tab on your phone, tablet or pc - or you may be able to find other online resources to help you record all these details.
When you have a doctor appointment, print off a copy and give it to them. That way they have a complete illustration of just how badly you’re being affected by all this.
Would it be worth asking if your local hospital has a Pain Clinic? I know some people have found this helpful.

I do hope you get some relief from all this.
You’re not alone. We understand.

stickywicket

Hello and welcome from me too

It will get better. It really will. But I mean 'better' in the sense of better than it is now not as one recovers from a cold or a cut.

Polyarthritis is a term used to designate that the arthritis is in 4 or more joints. What type of arthritis is is can be hard to diagnose as you have found but the MRI might clarify matters and I hope it does.

Pain is never not there with arthritis and it can be counterproductive to try to eliminate it as all that leads to is more and more medication - and still the pain persists. Finding our tolerance level is a key to success.

It does sound, from your description, that you might have an autoimmune type of arthritis. If so, Disease Modifying Anti-Rheumatic Drugs (DMARDS) will be prescribed and they should, eventually, help.

I have RA which, because modern DMARDS weren't around back then, led to OA too. It was very bad when my sons were little but, with time and effort, one can devise methods of playing with them. For a while I could slide onto the floor from an armchair and then haul myself back in backwards. i read to them a lot. Kids love to snuggle and be read to. Yes, the snuggling can hurt a bit but is so worth it Or, if TV is necessary, you could watch together and talk about the programmes. My younger son and I had so much fun doing this when he was little that we did it all again during his gap year before university. We roared with laughter then. With his older brother I used to score for him and his friends when they were playing games. Easy for me but I was involved and the boys appreciated it.

Pain is best ignored as much as possible and accepted when it's not possible. Stressing about it actually helps it to thrive. You might find a bath or shower or hot / cold packs help. Getting your legs up when relaxing is good but joints must be kept moving. A healthy diet and weight help.

When do you next see your rheumatologist for results?

I do agree with BettyMac that keeping a short diary would be a useful exercise at this stage. Doing that while trying not to concentrate on pain will be challenging but could actually help insofar as you will be, very briefly, acknowledging the pain then moving on. I wish you every success.

pameladscu

Thank you so much for all the replies

I’ll definitely try both the diary of symptoms and different ways to be with my son without having to run around or pick him up.

Unfortunately, I have no idea when I’ll see my Rheumatologist next. I saw a physiotherapist on Friday and she has told me it could be months before I could go back to work because my joints are extremely inflamed. Apparently, the MRI was also inconclusive. It seems like they can’t figure out what’s wrong with me but that both sets of blood tests that I have done shows inflammation. They did say that the first RF blood test was 31.8 which is positive and the second RF blood test was 17.6 which is negative. Again, no actual diagnosis. I did find out however that Arcoxia can affect fertility in women. I was never made aware of this 🤦🏻‍♀️. This means that I will stop taking this medication. I also find out I possibly have IBS which is exacerbating the other symptoms.

Oh well, I did get some exercises to do from the Physiotherapist which are hopefully going to help me move the bottom part of my back which is apparently not moving at all.

I’m in a lot of pain but just spending the past 1 1/2 weeks at home has helped so much. I’m a lot less stressed which seems to be helping with the joint pain.

Again, thank you for the little bit of hope.

stickywicket

Physios are not noted for their pessimism so, if yours says there's a lot of inflammation and work will be a distant prospect, I'd regard her as someone on top of her work and I'd do all she asked.

However, I wouldn't worry about the diagnosis or lack of. You have polyarthritis. Eventually it might become clearer which, of the 100s of types of inflammatory arthritis, you have but it will make little, if any difference to your treatment as the meds are the same.

I think some recent findings do show that NSAIDS CAN affect ovulation - not DO. They certainly never inhibited mine :roll: You will probably be offered DMARDS soon and most of them (though not all) can't be taken while trying to conceive but, nevertheless, we need them. Trying to cope with a baby and rampant arthritis is not something I'd recommend.

You are right that being off work and so not as stressed will be helping. Stress always makes arthritis worse.

As for the RF test. Not everyone with RA has a high rheumatoid factor and some people with no arthritis do. It's complicated hence the difficulties in diagnosing a specific type of arthritis.