Cant take this

magicdragon

Sorry for the miserable everyone but feel like I have no where to turn.

Im in agony every minute of the stupid day recently and nothing is helping at the moment, the new medication im on for my PA is not helping. Went to the pain clinic and the pain consultant basically said apart from the aesthetic injections into my back he could only give me morphine like tablets which I don't want im only 25. Rheumy couldn't care less. I feel so ignored and hated by society like how dare I even waste the space in which I stand. I hate being this negative but I cant concentrate on my uni work and its driving me mad. il fight have all my life but when life is just throwing constant c**p at you that you don't have time to get up how can you

elnafinn

Hi Magicdragon

I was having a quick look on the forum before I have to go out in a few minutes but I wanted to reply to you. You have not been on the forum since towards the end of last year, have you?

I am sorry that you are feeling such negativity. It must be awful for you to keep trying to fight this and feeling you are not getting any help and support.

I think a good chat may do you good. Why don't you give the helpline a call on 0808 800 4050? They are a lovely team of dedicated people and they will do their utmost to help you. I wish I had a magic wand but I do not and calling the helpline is the only other thing I can think of that you could do today.

I do hope that today goes better for you.

Luv
Elna x

dreamdaisy

If you want to feel 'better' you have to utilise what is there. Your age is immaterial: I suspect that really nobody wants to be on morphine-based tablets no matter how old or young they are, but when they find that they work and that actually life can move from the intolerable to the tolerable their value is appreciated. On days like you are having I could not function without the 100mg slow-release, OK they don't give back my life to me in full but they certainly do help me manage and do some of the things I want to do.

Life does throw constant crap at you as it does for everyone. It's how you handle it that makes the difference and every now and again, when it does get too much, it's fine to give in and say enough, I'm not fighting any more. Everyone needs a break from it from time to time - the important thing is that the fight resumes. The disease is not you, and you are not it. It does not define you. As someone on here recently pointed out to me, you have to determine the limits of your captivity and then ensure you meet them , if not exceed them.

I too am less than impressed with the meds I am on for my PA (meth, sulph, humira and oral steroids) so I can empathise with that side of things. I do realise, however, that I would be somewhat worse off without them: OK , they don't do what was promised but why should they? Why would they? It can take time to find what is the most effective - I don't know what you have tried or what you are expecting from them.

You say you are feeling ignored - I think one of the major problems with society is that there are far too many people in it for everyone to keep up with everybody else. I hope you have some close friends who can help you through this rough patch. I wish you well. DD

julie47

Morning Magicdragon

I am sorry that you feel so down at the moment
Could you be referred to a different rheumatologist perhaps?
would your gp do this for you? I asked mine and was reffered to a different hospital and these people are alot better.
I hope you start to feel better soon
Take care
Juliepf x

tjt6768

Hi Magic, hope that things are a bit better today, I know what you mean about life throwing crap at you, had a fair bit of that recently and now both my knees have decided it's time for a flare up.... So it's agony city for a while, but, and I will say this again, a wise and wonderful friend of mine always says, "It will pass, all things do"
We are always here for you, we support each other whenever we can


Be well

frogmorton

Oh magicdragon

Poor poor you.

Things sound to be really out of control.

First of all you are TOTALLY worth the space to take up!!! Your family would shout this at you I am sure if they knew how bad you feel.

I think if I were you I would

1. get an appt at rheumy's asap and take a good support person with you. there you need to discuss the drugs you are on and

2. go back to the pain clinic and try whatever they can suggest. I can't beleive there are not other options for you, but DD is right - forget your age the pain is NOW

I personally think you are amazing studying with all you have on.

Love

toni xx

stickywicket

magicdragon wrote:

I feel so ignored and hated by society like how dare I even waste the space in which I stand.

Hi magicdragon,

I'm sorry you're having such a hard time of it right now. I'm quoting the above bit because these are the words not so much of someone with arthritis as someone who is really depressed. The two can, and very often do, go together for obvious reasons but it's not compulsory.

As others have said, do talk to the Helpline or your GP or anyone else but I think you really need to talk to someone specifically about how low you feel. Deep unhappiness always makes the pain worse. I don't know why but I know it does. Please get help. You deserve better than this.

skezier

Hi Magic,

I am so sorry your feeling so down and you are not a waste of space either but it gets to you like that sometimes, especially when your young.

I think seeing a different pain clinic might have an advantage actually cus my one helps quite a lot with both the pa and oa so i find your ones treatment of you a bit dismissive to be honest. there are tablets and patches you can take that might help with the pain and the rumo, well they need to change what your on either as drugs or does cus this is clearly not helping you.

How sympathetic is your gp? If a good one they might be able to help you to get some better care.

I know it seem all against you jut=st now and hope so much that it will back off and leave you in peace but in the mean time don't turn it all on your self cus that will make it all feel so much worse. Hang in there and leaving you a ((( ))). Cris x

suzygirl

Hi Magic Dragon, I empathise with how you feel. As others have said all our meds have side effects, but we have to take them unfortunately to give us the best quality of life.

A pain clinic referral would be an excellent idea. When I went I was told that slow release morphine tablets were actually better for you long term than some of the other meds I was on.

Take care

magicdragon

Thanks for the supportive words guys just was very fed up yesterday because im allways in constant pain but rely on my painkillers taking the edge of it which it hadnt been doing and had really got me down because i hadnt been able to do any of my uni work.

I see my pain consultant and he is really nice and trys his up most to help allways reads my notes and allways rings to check up on treatment. I already have a stronger medication meptid but i dont like taking it because it slows down my thinking and spaces me out. My consultant is more than happy to give me stronger painkillers and has said he will let me be the judge of when i need more but he has stated that because of my age the longer i can stave it of the better for my futher pain relief and also he has seen people my age on stronger meds develop complications because of the medication. He has also ordered an MRI for my spine and im next in line for the pain management programme and im having smoatic psyio.

The problem is my rheumy she couldnt care less i told her my finger was getting deformed and her reply was il see you in 6 months. I think i should get a second opionion but at the moment she is the only one for the hospital im at and i dont know if they will refer me to the other hospital.

I have a very good gp but i feel hes afraid of stepping on other ppls toes. The other problem seems to be that no one wants to deal with my muscular problems directly and it is a major problem.

skezier

Hi Magic,

Good to see you sounding a bit brighter and thank god for a decent pain consultant though I understand why he is saying hold off for as long as you can with the heavy duty drugs.

I think with the rumo maybe you could talk to your gp and find out if they would be happy to send you to a different hospital for a second opinion? I think you have the right to ask but if you see what the gp thinks its better than just demanding maybe.

Hang in there and with a bit of luck things will ease off a bit for you soon. Cris x

magicdragon

Sorry for the late reply

skezier- I live in the catchment for two main hospitals and two minor hospitals, to my knowledge only one hospital(a) does clinics at the smaller local hospital(c) 15mins away. Now the hospital im at did have another rheumatologist but hes left (grrrr) and i dont know if the other hospital(b) does appointments at the other local hospital(d) if it doesnt that means 45min to 1hr to travel without a car on the train or bus (with bus only its about 1hr 30min). Also the two main hospitals sometimes share consultants i.e they work at both.

hopefully below will explain as im confusing myself lol

hospital b minor hospital d minor hospital c (where i live) hospital a

So as there's some doubt im not sure what to do because my gp finds it hard to keep track. Also i dont know if id have to go back on the waiting list which i cant do as i cant wait anymore gggggrrrrr.

Anyway ive been considering what the pain consultant said about going on stronger painkillers for a short period of time and i think it maybe worth a try but id like to know what ppl think?

dreamdaisy

Only you can determine the level of pain that is tolerable and for how long. Pain dullers do just that - they take off the edge, they do not remove it completely (no matter how strong they are). I have a range of pain relief to cover all the pain levels that my PA throws at me (depending upon its mood). I do not use the strongest ones for long for fear of their losing their effectiveness - I have years of this dross left and I want to keep some options open. I am used to being in pain and can usually get by on just two cocos (30/500) a day (four if things are not too wonderful). You do adjust to the pain, over time. DD

magicdragon

Ive been managing on co- codamol 30/500 for the majority of the time and your right they only usually take the edge of and im allways in constant pain but they are being less effective recently sometimes not working. Ive been given meptid which i only take when i have to for the very same reason. My question was more has anyone had any stronger meds in the short term and then reverted back to the less strong ones and how did it work for them. Can i ask you what you take?

dreamdaisy

I have the 30/500 for every-day, 50mg tramadol for deeper pain (I have to use those at night, they render me too dopey for daytime and work etc), slow-release 100mg trammies for the really rough times (they are very good, they are the ones I use sparingly) and liquid morphine for the wall-climbing-sitting-on-the-edge-of-the-bed-rocking-and-crying times (which, I must admit since I started humira, are now non-existent). I have PA and when it flares I have a large number of joints that like to remind me they are there - day-to-day it's only sixteen that twang. DD

skezier

Hi magic,

its always difficult when there is traveling and waiting lists as well. I guess it depends really on if your present rumo has been helpful at all and if not then would a new one be a better idea? I don't know cus here we only have the one hospital so our choices are somewhat limited.

Might be worth finding out though whether the other rumo does ever visit the local hospitals?

have never gone back with the tablets except morphine but the pregabalins are as strong just a different kind of drug so that was more a side step as on the morphine I was too sick and too zonked as well.

That wouldn't mean you couldn't though if it helped for a short time and the condition was got under better control you might not have to stay on it for too long maybe?

Keep us posted and got everything crossed that you will get a break from it and it eases up for you soon. Cris x

magicdragon

A update ....

Over the weekend I had increasin pain in the r side jaw joint & my ear, this had been buildin up 4 about a week & by sat I couldn't take any more along with everythin else so called the out of hours.

They where mega nice, rushed me through to the dr who wanted 2 see me up @ the hospital that they r based @ (cos of lower immune system & I had an infection when I was younger that didn't got for 1.5 months & couldnt walk) but I had no way of getting there.

He thought it was either arthur (scared the pants of me) or an ear infection, he agreed it was more likely an ear infection so prescribed me antibiotics 2 pick up the next day which I did and 2 go to the dr on Monday.

So went 2 my gp & he said that the jaw joint is inflamed but he thought it was likely an ear infection that is agrivating it than the arthritis that's simply attacking it. He also gave me new medication for the stupid dizziness ive been having which was getting better buts got worse (i really don't need any more hindrance with walking) & then talked 2 him about the rheumy.

I basically went in2 the whole thing (crying & all ) & ive never seem him look so angry. He turned around & pretty much said they are known 2 b pretty much useless & has turned round & said he will refer me 2 the other hospital which will be about a 3-4 month wait but wont tell the other hospital & then I can switch if I feel there better.

I was like kudos for the devilishness doc! I have huge respect 4 the guy. I've managed 2 find out the other hospital do do clinics @ my most local hospital the only thing i hope is that she's not covering for the other hospital which according to the website she's not.

Im also goin 2 make an appoin 2 see the pain consultant in the inter medium 2 see about stronger pain meds for when its unbearable not that i want 2

Magic

caterina57

Hi Majic - What a rough time you have had, Hopefully though, now your GP is fully aware of your problems you may get your Rheummie probs sorted at last!
Also the anti biotics should sort out the ear and Jaw pain so things certainly seem like they are on the up for you.
Remember we are always here to have a rant at, Arther whatever form is horrid and impacts upon us in a way only us sufferers know, The other bits like feeling low and worrying for the future affects us all too and I for one am so grateful that I found this site and wonderful new friends.
Cath