Advice plz pain & aids

magicdragon

Sorry i havn't been on again im just all over the place really need to be here more to so i can feel im not so alone but so we can all help each other.

Anyway the past few months ive been waking up in the morning with only what i can describe as the feeling like someone has come along and snapped/broken both my wrists and ankles and huge stiffness in my hips.

Initally my psoratic arthritis started in my one knee, then went to both and my rheumy thinks its in my wrists now and maybe my feet, i do get pain in my back but i think that is more due to the way i walk/move.

To add to all of this about 4 years ago i had the worse sciatica going for about 4 months and suffered really bad because of it (was house bound alot of the time) i still get it but the episodes where alot less frequent and less severe UNTILL i turned wrong in bed about a month ago and and its been hurting but not to bad but now i turned wrong earlyer this week and i keep seeming to catch it and especally when im in bed and its got to the point when i get into bed and i cant move taking me a good hour to get up and combined with the arthritis its not good

Regarding my arthritis i dont feel like im in a flare up and so i dont understand why im in so much pain the amount of painkillers ive taken has increased alot and i dont know what i should be doing about the sciatica i suppose gp appiontment?

Also i was awarded Dla big relief and weigh of my shoulders now but i wanted to purchase some crystal tap turners and i dont know the name for it but it kind of looks like a walnut cracker that you can hock around a jar lid or bottle top to open it? i was wondering if anyone knows of anywhere online thats repitable?

dachshund

Hi Magicdragon.
I know what you mean we have one it opens any jar or bottle. i dont know what its called
ours was a present 8 years ago.
i think you could get one from argos or the betterware book or boots the chemist aids to help people.
joan xx

skezier

Hi Magic Dragon,

Sorry your feeling like this, I hope it will soon get helped for you.

You haven't said what pain stuff you take but I know that Gabapentin can help though I haven't had them I do have the next generation stuff called Pregabalin and though I keep banging on about them they are amazingly good for me at least.

The turning over in bed I know very well! It really does catch you out sometimes but in time I think I have learned not to try and turn in the normal way even asleep (well now I can't turn over with out using arms and legs).

Have they ever talked about sending you to see a pain clinic? they can really help as well. I think you do need to ask sometimes cus they don't always know how bad you are less you tell them. Take care, Cris

luckybug

Ask your doctor to send an occupational therapist to see you, I have a closomat toilet as my arms are stiff and I cannot wipe, dunno how I ever lived without it, and is my most missed item when I am away from home. Also OT can help with taps and bathing, perhaps a walk in shower. wet room might be of help to you, there are disabled facility grants if you own your own home, and there are grants if you rent, so worth having a chat with an OT.
As for opening jars and bottles, I received a culinare jar opener for xmas and I have just bought the new culinare tin opener, both brilliant gadgets specially for us arthitis sufferers. My main aid is a skirt hanger, not a coat hanger a skirt hanger, It is invaluable to me, for dressing, I can get tops over my head with it, and its great for pushing bra straps up, something most people would have in their wardrobe, I have mine on the back of my bathroom door, and woe betide anyone who moves it lol. Also my longhandled hairbrush is another thing I cannot live without it, and there are a few around, I have the sort that can fit in a normal handbag, you can break it down and then push it back together if your out and about. Good luck hope some of this helps.

luckybug

I have bought from express chemist before.
http://www.expresschemist.co.uk/product_3312_long-handled-comb.html?ctopt=awin

I was also feeling like you, but once I went on the anti tnf drug humira, I could get in and out of bed again, my hands do not feel half as bad. As I say good luck xx

josiec

Hi,
I sympathise with your pain and hope it improves!! Sending hugs! Not sure if I'm meant to name it, but am not endorsing it so here goes: I have ordered from disabledaccessories.com on several occasions. You can do it online or get a paper catalogue sent to you-they stock the kind of gadgets you are after. As someone else has said, you can request an OT visit, I know that varies depending on your NHS trust, etc-I'm not eligable as I don't live in the borough where I go to the hospital (so I've been told anyway!!)-good luck if you decide to persue that anyway! Kind regards, Josie

magicdragon

I have gone to the occupational therapist it was not a nice experiance. I got refered through my rheumy as i said how much i had been struggling.

First of they where half an hour late because they saw someone early because they were ' there'and so was in more pain by sitting in the most uncomfortable seats going. Then when i was called in by a women occupational therapist she sat down with me asking me what i was struggling with and i said my wrists and she tested my strength which wasnt to bad but my point was griping someone's hands isnt the same as turning a knob and thats my main difficulty with my hands along with picking up any substaintual weight.

Then a male theripist came in he was the senior therapist and the one i was suppose to have my appiontment with and he asked me again what problems i have, i said and he said 'well what do you want us to do?' and i said i didn't know that i had been refered by my rheumy and anything to help would be a bonus which before he came in the women was giving me ideas of adaptions to help for example using a chip pan net to cook my veg in to stop me lifting a heavy pan when draining veg.

Anyway he turned round to the women and asked her what my blood results where like? and she said showed him and he said your levels are practically normal and fine. I tried to explain i still have pain regardless that if im in a flare up or not as the damage is already done. He then kept on saying my levels where fine and that in his own words " i am not going to flood you house with thousands of pounds worth of equipment that you dont need" at this point i was in tears as i had not asked for this appiontment or equipment i thought at best i may get some tap turners or at worse they would give me practical advise and where i could buy them. I didnt ask for thousands of pounds worth of equipment and to top all of this off THESE TESTS he was going on about where nearly 3 months old and i know flare ups can occur quickly for me and as a scientist i wouldnt have found these tests not creadable.

He then went on to smile continuesly and laugh when i said i felt like he was implying i was making this up. He asked me what i was doing to 'help myself' i told him i was losing weight (have now lost 4st 2.5lb) and swimming once a week with a friend to help me and i was trying to increase it to his reply was 'thats not good enough' and he suggested that i join a class that they do which involes wait for it CIRCUIT TRAINING!!! i was lik ookk >.< and how the hell im i suppose to do that! i told him that i couldn't cycle as if my knee bends that far it cracks out of place and that i couldnt run either and then he went on to explain thats what they do there and i need to help myself more.

He also picked on the fact that i use a walking stick saying i didnt need it and my rheumy said not to use it which isnt completly true she said i can use it but that she was worried about me putting pressure on my wrist which i understand and im mindful of not doing it to much and i went on to say to him does he really think that i want to have a walking stick at my age? and i said how upset i was when i brought it too.

Also when i tried to explain i knew about my condition as im studying zoology so i know the basics from there and i had read up on it and yes i may have got some bits wrong but at this point i was in floods of tears with him smiling at me saying its incorrect.

So at the end of the nightmare as you may imagine i wanted to run out of there and i would of if i could!

And after that appiontment i went my first psyio appiontment really didnt want to but im glad i did as he was lovely told me i was doing great that swimming is a great all round exercise and anything he gave me would be a bonus. Also at my last appiontment i talked to him about my wrists and he gave me some splints to use when i have to lift anything and they really have helped.

page35

Hi Magic
this OT sounds like a right a*$3 :x
could you complain about him or try to get an appointment with a different one the lady sounds like she would have been helpful.
hope you feel better soon.

woodbon

Hi, If you type tap turner into google and then look at the disablity aid sites, typing in tap aids or tap turners that will come up with some Disibility equipment providers and look under bathing, you'll get a good choice. I' ve just done it. so it can't be that hard. :roll: Love Sue