will this ever end????

purplestorm

Hi all just an update on my current situation,

Still taking the sulf, steroids and anit inflammatories, needless to say they are having little effect on my condition, and have gone back to square one again. Pain has returned to both my feet especially my toes with the constant burning sensation :-(

Im still having to use a walking stick to get around as the pain in my hips and bottom has not improved either.

I have continued to have my bloods regularly monitored which have seemed to done a full circle from bad to ok back to bad again including my inflammation markers and my liver function.

I had a MRI scan a few weeks ago and have received a letter this morning to advise that they did not find any inflammation within my lower lumbar area which they where looking for but have found a number of cysts in my sacrum. They are wanting to carry out more tests and another scan on this but have insisted that they are nothing to do with my symtoms as above.... I was happy that obviously they havent found any inflammation but totally guttered that on top of all the above i now have cysts to deal with, I know its nothing really serious but im feeling sooooo disheartened at the moment and just wish all the medical problems would end.

I have to go back and see the consultant a week monday and when I last met with him he said that if the MRI showed any inflammation that he would change my medication im just really worried that now it hasnt that hes gonna keep me on medication that just isnt working i feel as if im popping 24 tablets a day just to keep someone in a job!

Sorry to rant on a bit im just at the end of my tether now and everything is just getting on top of me!

x

dreamdaisy

I am into my fifteenth year of this dross, and it doesn't get better as such, what fluctuates is one's ability to cope with it all. The meds seem pointless until you stop taking them, then you tend to find out otherwise! I had my bloods done fortnightly for years, it has been monthly for a whle now which is easier. It's good that they have found the cysts as you do not need any further trouble from those, so let's hope they can deal with them soon, yes? The better times are about, it's just a struggle to spot them sometimes. I wish you well. DD

elnafinn

You have a good old rant, Purplestorm and it probably made you feel marginally better.

When you next see your consultant and if he does not mention about changing/altering your meds, you ought to challenge him on this and let him know what you told us how you feel regarding taking the meds and they are not helping you much except lining someone else's pocket.

I hope you come away from your appointment feeling better about things than when you go in.

Elna x

tjt6768

Rant away hun.... Sorry that you are not doing so good mi dear.
We will all listen.

frogmorton

Hi purplestorm

L am so sorry you feel so very shift at the moment and no need to appologise for letting off steam....l think you are entitled.

I understand you fear about not getting 'better' medication after the scan, but l think you should write some of what is happening down so the doc can see how it IS for you day to day. Things like how long it took to do a normal activity and on a scale of 1 to 10 how painful it was, how long to get to sleep etc.

I am also sorry about the cysts...l hope they can 'do something' with them soon too.

Love and hugs

Toni xx

dreamdaisy

Morning purplestorm, how are things today? DD

dillhands

I am wondering this I have been to a specialist who has said it is arthritis i was given an injection in my hip and have to go back in July i am on inflamatory tablets as well . It is in my hands which are extremely painful it is constant and goes from aching to cramp like pains . I am at the point of screaming then I read teenagers with this type 0f pain and i am thankful it has started late in life i am retired is there any relief or does it spread to other areas

frogmorton

Hi Dillhands

Glad you have found us - but sorry you needed to :sad:

Yes it can start young, but either way the pain is the same and talking to us lot should help keep you sane.

Have they said which kind of arthritis you may have? Might be they dont yet know but have taken bloods to find out?

Difficult to say wheather of not it will spread that is different with all of us...but we are here for you

Love

Toni xx

dillhands

I know it is Rheumatoid but on inflamatory tablets had one injection just trying to find out more thanks

purplestorm

OW OW OW OW OW OW


Im sooooooooooooooooooooo fed up of the pain wish it would just go away cant believe that just sitting still can be sooooo painful im sick :-(

dreamdaisy

I know these times so well, a good technique for self-help is to shift your focus away from the pain, divert yourself with reading, doing a puzzle, music, talking book, anything rather than concentrating on what is going on.

I recently went to an AC-run Challenging Pain course and we did a very interesting exercise. We were told to focus on a particular part that was hurting for a period of thirty seconds. We did and at the end of the time we all agreed that the pain had worsened and none of us realised that thirty seconds could be so long. We were then told the same exercise would be repeated (groans all round) but that this time we had to imagine we had won a competition where the prize was ten thousand pounds a week for a year - how would we spend it? The thirty seconds flew by, we all agreed that the pain had lessened as we spent our windfalls and, we were amazed to learn, we had actually been 'spending' for forty five seconds. Distraction techniques certainly help, as does concious breathing or visualisation.

I hope this all blows over for you soon, purplestorm. DD

julie47

Hi purplestorm

Sorry that your pain is unbearable at the moment, and that youu have to go next week for another mri for the cysts.
I hope you feel well soon
Take care
Juliepf x

dreamdaisy

Hello purplestorm, I hope things have eased for you now and that life is more bearable. DD

hileena111

Hi Purplestorm
How are things going now.......are they any easier?
DD is so right about the distraction techniques

Love
Hileena

ironic

Hi Purplestorm,
Good luck with your appointment on Monday. Write down how you have been feeling and make sure that you tell them that your medication has not been working for you.
It would be great if you can take someone with you but if not let us know what time your appointment is and then we will be in your pocket to support you when you go in.
Lv, I x

dreamdaisy

Hello purplestorm, how are you today? Feeling better, I hope. DD