im new here & feeling really really pathetic with pain

earthspirit

hi people! this is my first post, driven to distraction by pain and looking for source of inspiration to get me through this. im 52 & was just dx with RA 18mnths ago but now suprisingly, doctors realise i have had this condition since at least my very early teens. i was superfit all though teens 20s & 30s, eating exceptionally healthy diet and doing crazy stuff like swimming 14miles a few times a week in the north sea off Aberdeen. run for miles, walk for miles, sleep little, amazing multi-tasker etc etc. have i now suffered the most incredible bump down to earth with what i am now suffering!!!!

i had flares every month or so during all of this period but found ways to cope with pain and inconvenience, whilst trying to persuade doctors that yes the pain really did go from knee to knee, wrist to wrist etc etc.

im one of those very fortunate people who was never really ill and have had pneumonia without knowing i had it, cancer in my throat which killed itself off, a badly healed broken rib over my lung, as well as a broken cervical spine & a severed main artery.

then RA struck big time in my hands & it took me 4 months to get any treatment and finally a diagnosis. turns out i have very severe end stage RA and they wanted to put me on methotrexate. i have declined this treatment for numerous reasons and most health professionals i have spoken to agree with my decision.

i had a couple of shots of kenalog which worked ok for a couple weeks with my hands but more recently did zero for my knees. i am now on the second week of sulfasalazine and would be interested to hear from anyone who has taken this drug.

my whole body is just ripping apart with pain despite paracetamol diclofenac and dihydrocodeine. i also take rosehip & glucosamine.

i have lost stone & half in weight and have lost 20% lean tissue mainly from arms & legs and this is making me very weak. ive had some hydrotherapy which worked to a point. however i am virtually unable to excercise for more than a minute or two as each session causes more flaring.

ive got flares in my toes ankles & achilles tendons. my knees are both swollen and lack of ability to walk for the last 6 months is making the situation worse. my hips hurt but only a bit"
all my finger joints are swollen and the little bones in my wrists continually crack and sting. (you all know the pain so i wont go into colourful descriptive terms lol) my neck only turns an inch or two either way and 2-7 cervical vertibrae are in flare constantly. one shoulder is seriously damaged and i have the added problem of pressure on the brachial nerves which runs from neck down arm. FAR WORSE pain than any sciatica i have ever had, in fact the very worst pain i have ever experienced. the bottom of my back feels like im sitting on a sausage roll and as well as being really painful it also feels incredibly ODD!!

im not living at home right now as i am virtually unable to look after myself although i can still drive short distances and i also do make the effort to dress myself to keep some muscle tone. what i dream of is being able to have a long soak in a warm radox bath but here i only have the option of a rather inadequate shower and the bed im in is very uncomfortable. plans for a new one when i go back home, whatever the cost...temput mattress is really not comfy for me...anybody else think that?? this whole house is unsuitable for all my needs but this is where the help is so beggars cant be chosers eh??

im also using one of the medicur magnetic therapy machines but after 1 month do not feel any help from this despite the makers claims.

i feel like i am no longer me. i feel that my personality has totally changed and i have gone from being a very caring compassionate homeopath who dealt with my aches exceptionally well, to a shrivelled up, sometimes verging on suicidal wreck. i could adapt to going into a wheelchair, i could cope with some of the pain but the position now is 50 min sleeps and 24/7 pain. diclofenac helps the swelling until the effect wears off & codeine does block the signal to the brain a little bit but oh god i am so sick of every part of my body aching all the time. the disease has messed up my blood counts and fighting against dvt too which i know would resolve a bit if only i could do some walking and put on weight.

i dont know what anyone can say to me that i havent already tried but im feeling really really pathetic & low and just want to escape the pain for even a hour or two. i keep thinking that when i can take the baths i keep being told help i will feel better but thats about 8 weeks ago and im struggling to cope. i suppose what im really looking for is some elusive magical way to feel pain free for a while....yea guided meditation works but only whilst im doing it. zero quality of life as each waking moment is absorbed by trying to escape the pain.

anyone got words of wisdom for me on this nasty wet cold blustery day??

dreamdaisy

Hello, it's nice to meet you, I am glad you have found us and I do empathise with the pain as it is relentless, it grinds one down to a ghastly extent and it changes our perception of ourselves, life and trying to live it. I have PsA which has led to OA, I gave up years ago with the gizmos, gadgets and supplements as none of them work on the immune system but that was all I had available to me to take as no-one could tell me for years what was wrong. It was a very frustrating time and it's still frustrating as what I take now is only controlling the disease acitivty - it cannot repair the joint damage caused in the untreated years and the years that followed beginning the meds.

Unlike you I am on methotrexate, together with sulphasalzine and an anti TNF trreatment called humira. The sulph did nothing for the arthritis (it was the first med I was given, I've been taking it now for ten years) and other things have been added along the way. I have a lifetime of taking meds and no longer think twice about what they are and/or what effects they might cause. I want a better quality of life now, that's why I take them. I have to go now as I have some stuff to do, but I will be back later. You are in the right place for support and advice, we've all been where you are and know what it is like. It takes time to develop one's coping strategies but the two most important are listening to your body - if you need to rest then rest - and being able to distract onself from the pain. That is vital - not easy admittedly, but vital. DD

stickywicket

Hello earthspirit and welcome from me too.

You’ve come to us via a rather unusual route. I’m still struggling with the idea of your having RA since your teens, with regular flares, yet still managing to do all you did and only now getting a diagnosis . I’m amazed at your stamina but also at the inability of the docs to get to grips with your disease.

You will have your own reasons for not wanting to take methotrexate. I can only say that it’s a very common med for RA and many people on here take it. I’ve been on it for over 10 years without problems. I’ve not done sulph but that’s another common one although, like meth, it can be several weeks before it kicks in. The other meds you’re taking may dull the pain but won’t alter the disease itself. As for the rosehip & glucosamine? Well, it can’t do any harm though I’d be astonished if it did any good.

I suggest you ask to see an Occupational Therapist who will advise you on adaptations you can make to your home and, almost certainly, provide some of the smaller stuff – grab rails, raised loo seat etc. Personally I love memory foam but it’s a horses for courses thing.

I’m sorry, we don’t do magic wands :roll: . That’s why we’re all still here. Have you been offered steroids or a steroid jab as a temporary measure to help until the sulph starts to work? If not, you could ask for some. Or some stronger pain relief. Other than that, I’m afraid it’s just a matter of hanging on until they do. And keep talking to us as we do understand.

tillytop

Hello earthspirit and welcome from me too.

I am so very sorry you are struggling so much at the moment and I would like to start by saying that I fully agree with Sticky that you have done amazingly well to have dealt with this for so long before having a proper diagnosis. And as for feeling very low and as if you can't cope - well many of us have been there so, even if we can't offer any magic solutions (if only eh?) what we can do is to listen and to share - and we are very good at that here.

I am sorry too that you don't feel able to take the methotrexate and I hope that you haven't been put off trying it because of what the medics have told you. Unfortunately, it is one of the hard truths of RA that, without disease modifying meds (DMARDS) like methotrexate the RA will progress. You might be encouraged to know that I have come across people at my hospital who despite longstanding RA and severe joint damage do find relief from the pain of uncontrolled inflammation by taking DMARDS and/or biologics. I took Sulfasalazine for many years but, because it is one of the milder DMARDS, it wasn't particularly effective on its own and was combined with other DMARDS to try to bring things under better control. It can take a good few weeks to get into your system though so a good deal of patience is required.

In terms of your current pain levels, I would hope that your GP would be able to suggest some different or stronger pain relief to see if that might help you. Or maybe your GP or rheumatologist would consider referring you to a pain clinic for more specialist advice. As has already been suggested, maybe steroids would be an option for you short-term just to try to give you a break from the constant flaring.

I really do hope you can find some relief soon and that you start to feel some benefit from the sulfa sooner rather than later. Please do keep talking to us though because, in my experience, feeling you can talk to people who really understand can make a huge difference.

Thinking of you.

Tillyxxx

7worlds

Hi Earthspirit. Welcome to the forum. I,m sorry you are having a rough time at the moment. You are probably still a bit shocked to be diagnosed but the guys on here will be a great help and comfort to you and you might not believe it now, but you will find the strength to cope. We all manage to find it in us from somewhere even when we are at our worse. This disease will make you stronger. Hope you get some relief soon.

7worlds

earthspirit

7worlds wrote:

Hi Earthspirit. Welcome to the forum. I,m sorry you are having a rough time at the moment. You are probably still a bit shocked to be diagnosed but the guys on here will be a great help and comfort to you and you might not believe it now, but you will find the strength to cope. We all manage to find it in us from somewhere even when we are at our worse. This disease will make you stronger. Hope you get some relief soon.

7worlds

as a homeopath i have treated ptss and other conditions of the mind. i KNOW these things but my brain just hasnt been connecting!

7worlds

I know what you mean. I dont know if its the drugs or the RA but sometimes i cant even remember my nephews name and im standing there looking at him.I know the logic but i sometimes struggle to put it into practice.

7Worlds

dreamdaisy

RA can be a pernicious condition, caused by an over-active auto immune system. Quite how you have managed to get this far without any meds etc is peculiar but I guess it has now wound itself up to really have a go at you. Accepting the fact of the disease is a struggle - you say you have helped others with your homeopathy, but this is not others, this is you. That's a whole different ball game. DD

valval

as you have worked out we all differ on what works for us and how much i am sorry you are in so much pain the sulfa takes 3 months to work so still time try to distract your mind play games on computer etc i know it short term but can help a little lack of sleep messes with head. if no better soon give rhummy a call they might have something to help good luck val

earthspirit

thanks for replies and now at 6pm i feel able to face the world and go buy some peaches and nectarines which seem to have helped something....

if you can learn anything from my decades of non treatement i would say the healthy diet & regular excercise are what has got me through it. my own interest & knowledge of the mind played a part in dealing with the pain but it was being fit physically that gave me the energy to walk on or use painful limbs. flabby muscles dont support the joints and that is the pain from which i am now suffering.

i did post photos of my emaciated arms on another forum but i think i freaked some people out a bit :shock:

dreamdaisy

I'm pleased to hear that you are now feeling a little brighter - I hope the fruit is tasty. I suspect that for many of us on here arthritis and physical fitness have been, to say the least, reluctant bedfellows. There are exercises available, that help to strengthen the muscles to better support joints, but that alone won't alleviate the pain, my thinking is that that is not attributable to muscle weakness. I've been walking on painful joints for years, many of us on here have. Lack of energy is another symptom of arthritis, be it an auto-immune or OA. Again that is not attributable to being 'unfit', it's part and parcel of the disease. DD

stickywicket

Oooh peaches and nectarines sounds lovely.

You are absolutely right that flabby muscles don’t support joints. However, there is more to auto-immune versions of arthritis than supporting joints. I, too, got RA as a fit and active teenager (I walked everywhere, ran, played sports etc) but it felled me at 15 just as it’s felled you now.

When the disease is active then meds that will limit it, plus rest, combined with taking muscles gently through their full range every day, is essential. One without the other two is, I think, where the problems start.

I think your current pain is due to more than flabby muscles. It’s not just muscles that suffer when auto-immune arthritis is active. It’s also synovial fluid, ligaments and general malaise. I do hope the meds will help soon.

frogmorton

Earthspirit

I am so so sorry!!

you ARE still you :shock: You really are :shock:

I can so see why you feel you are not though in a short period of time life has turned right upside down the pain is terrible I know. and you are not at home

You sound to be a very upbeat and positive person which will help no end.

As will the meds once things are under control :? Has anyone caring for you suggested oral steroids? I only mention it as it can help temporarily while the DMARDs are starting to work, (sulfa).

Glad you have access to the net and EXTRA glad you found us lot because we are pretty well always here and do understand how you feel and are a mine of useful tips and support .

Hope to see you posting regularly now and hope also that all the lovely messages don't make you cry too much :? I bawled my way through the first 7 days on here beacuse everyone understood me

Please do take care and I hope you sleep well tonight

Love

toni xxx

tjt6768

welcome from me too..
I've been on sulfasalazine a good few months now and I think methotrexate will be added next. I lost three stones on the sulfa as it destroyed my appetite. I think when the meth is added I may be able to lower the sulfa dose to get a littler of the appetite back.
I've had OA in the knees from around 13yrs old, same with the spine from around 19 and now an inflammatory version just for good measure, that started around 3 yrs ago now. Im probably wrong with all those guesses. One thing I know had deteriorated is the memory :shock: None existent these days..
Was on dihydrocodiene for many many yrs, till my tolerance was so high I was taking up to fifteen or so 30mg tablets per day
Now on diclofenac, paracetamol and fentanyl patches along with the sulfa.

Sorry, I've waffled.. It's been a long day lol..
Best wishes, glad you've found us, hope you stay.... It's a great place

earthspirit

soooo happy to be talking to such a lively bunch of people! i think im probably a control freak and so thats why this disease gets to me so much sometimes.

seriously though, the brachial nerve pain caused by the damaged cervical vertibrae has got to be the very worst pain a human can feel. they cant operate or anything so that isnt an option even tho i dont want an op. in one arm i have lost all the muscle of my armpit which is a weird sensation to deal with. i have my elbow clutched to my side like glue as any movement is as though my whole arm and neck are being ripped off my head (mixed with many swear words) when its not aching i do move my arm in the hope that the muscle will regain some tone. i have these odd "bingo wings" why on earth did i think that only chubby arms could get like that. my arms are so weird considering i dont have very much visible distortion of other joints.

i feel sorry for people who do not have access to computers/internet as they must suffer a lot without the help a few words from others to cheer them along. maybe that is something that should be available to people when they get a dx? i would hate to be suffering totally alone without info & friendly voices who really do know what you are feeling and have walked the path you are walking.

frogmorton

earthspirit wrote:

soooo happy to be talking to such a lively bunch of people!
i feel sorry for people who do not have access to computers/internet as they must suffer a lot without the help a few words from others to cheer them along. maybe that is something that should be available to people when they get a dx? i would hate to be suffering totally alone without info & friendly voices who really do know what you are feeling and have walked the path you are walking.

Good Morning Earthspirit

I agree 100% how would we cope struggling along with this on our own? :? I dread to think!

Luckily we don't have to because this site is here. I think that most rheumatology clinics do have a poster on AC on their walls, but agree a leaflet woudldbe fantastic.

Several members on here are AC volunteers and do 'awareness' days at local Gp and hospitals providing information to the public.

Hope you do feel able to join in on some of the threads going on here you will be made welcome. As you have had experience helping others you might help us lot too

Love

Toni xx

dreamdaisy

Hello, how have you been today? DD

stickywicket

How are things now, earthspirit? Any better?

earthspirit

thanks folks i am out of the pathetic miserable b*tch mode. coping with so many painful joints at the same time really grinds down your spirit.

i suppose ive also had this constant low level stress of living out of my own home and "putting up with" the inconveniences of a rather uncomfortable place to be living.

although im only on week 2 of sulfasalazine i do think its working in small ways already. its not helping the pain but my appetite seems to be better. losing all the weight & the muscle and the physical strength has created a huge challenge in not actually starving to death. luckily my doctors prescribed ENSURE PLUS drinks which have helped put the correct nutrients into my body.

i do hope i can help people on this forum. i see myself as a strong person mentally and i have reached that rock bottom snivelling helpless pathetic creature myself so i really do know what its like. im my own mind, which might not be how anyone else would think, this is another stage on the great adventure of life, waking up every day to face the challenges and feel good for all the tiny positives i may feel.

im not big time into celebrating birthdays because the reality is that every day you waken up, breathe in that morning air, you are having another birthday. i was born on a fri 13th so i think that created a person who did not have entirely conventional thoughts :roll: :roll:

valval

my youngest was born on friday the 13th with black hair and blue eyes and damian had just been on lol you will be big help on here but take time to cope with what you have to life never throws more than you can cope with it lets you know how much strenth you do have (even if from time to time it is hard to see)
glad today a little better home might not be perfect but it is where we can relax val

stickywicket

You do sound better today, earthspirit and that's good. We all have our 'pathetic, miserable bitch' days (just ask my husband ) and who wouldn't with all the rubbish we have to deal with on a daily basis?

It's good, too, that you're appetite is improving, if only a little. My old Mum always taught me 'a bit of what you fancy does you good' whenever I lost my appetite and I think it's a useful principle. Listen to your body and it'll often tell you what it needs. (I don't think she meant it to apply to men though )

Keep plugging away. Things will improve.