change of pain relief.

[sylvi]

Two weeks ago my gp took me off targinet pain relief as it was sending me loopy. He put me on marol and kept my steroids at 20mg. It has taken that long to get into my system. I thought i was getting on really well, i was managing to do things round the house and felt that pain was now under control. What a mistake i made. Yesterday i pulled a few carrots, got someone else to dig spuds, did a bit of ironing, i have a press at which i sit down to do. So far so good. I was feeling very pleased with myself, thinking if it stayed like this i could manage. Well that was the theory. My joints in both knees and hands and right shoulder are very sore. My eyes are puffy. I know we are getting rain tomorrow, not sure if that has anything to do with it. Didn't sleep very well either. Have been in tears this morning. Thankfully my hubby was on the phone to calm me down and talk to me, so though i'm in a lot of pain i'm not so weepy. I feel that i can't win whatever i do. I dammed if i don't do anything and dammed if i do. Where do i find the middle groung, gods knows i don't.

I start counselling at the end of the month so hopefully they will be able to help

I'm not going to do much today, am going to get my nails done and thats it. My daughter asked if i wanted to cancel my app. i said noas i thought it would do me more good getting out.

So now i'm going to get dressed and try and make an effort. I might have to go to bed later but never mind.

Sylvia

[Tricia-P]

Oh Sylvia, how many of us have been there, I'm one to start with. That eternal don't do too much but you carry on and do what you think is a little; pull a couple of carrots, then wham next day your feeling c***. Your eyes being puffy have you had them checked out as I had very sore eyes especially in the morning when I opened them and it turned out I've got dryeye syndrome. So artificial tears are the order of the day.

Sylvi, do you take anything to help you sleep and keep the tendons and muscles quiet, I think you'll find a lot of us take Amytriptylene this helped me, as if you are weepy as well you will be tired and emotional, at the end of the day RA has robbed you taking your life as it was and dumping a new one on you. It's taken me 3 years to sort of accept it, and I thought it was under control, so had my carpal tunnel operated on and in the 6 weeks I was off Humira the RA has slipped into my spine and the synovial fluid has got into the facets and pushed the discs out. I'm now on the list for an urgent operation, we've been for a 2nd opinion as well. So I'm on very light duties and must watch that I don't twist or bend my spine back.

So no pole dancing for me.

take care and try to write down what you have done then see how yoou feel the next day, maybe just the walk in the garden and pull some veg;

then thats it. next day do that plus something else, but not ironing!!

let me know how you are

xTriciax

[Hidden]

tariginact!! is your old drug Sylvia.. can you try me or rather you try with the name of your new drug again

no such drug as marol..?? do you men tramadol or paramol(branded dihydrocodeine) you got me puzzled if no one else with that name.. suspect it is like me a typing problem>? or may be a spelling problem.. cos there are lots of drugs with v similar names.. it is important to have a list to hand of medication taken(correct names).. ideally prescription repeat(white side) of form handy incase of problems/ side effects.. always study side effect leaflets carefully.

[sylvi]

Well Tricia,

Just got back fromhaving my nails done. Still ache, very tired, but i'm alive. Nails look good..I've just been weaned of sleeping tablets as they weren't having the effect that they should be having. Just take them now and then. My head feels clearer for not having them, i might take one tonight though just to get some rest. As to my eyes, i'm under the specialist already. In fact i see him tomorrow. I hope he is better than whenilast saw him. I thought he was no good. He told me to bathe them twice a day in salt water, then put cream in them twice a day. Then to put drops in them every hour throughout the day. I start counselling at the end of the month, so hopefully that will help with acceptance. We'll see. I'll give it a shot, it might help. Nothing ventured nothing gained. I post on here at the weekend and let you know how i got on.

Its nice to know that i'm not the only one and you and others share what i'm going through and i thank you for that.

Sylvia xx

[Hidden]

Hi Sylvi - Oh you are Mrs Pickle at the mo. Do you get hay fever, just wondered because of the puffy eyes. I am having aching all over sore joints time at the moment, and sometimes I am sneezing like a good 'un, just like hay fever. I used to get HF when I was younger then it sort of went away Just a thought.

Talking to my cons about pain relief, there are lots of different sorts and combinations you can try, if it isn't working, go back, or better still ring the rheummy team, they are the real experts on pain relief for RA, I just had my nails done too!! Feels good, especially with the hand and wrist massage that goes with it.

Hopefully the counselling is going to help you with all the emotional whatsit that goes with this disease, I know it helped me, and I am still on Anti depressants, because it really does take some getting used to.

Take care

Julie xx

[sylvi]

Julie, no i don't get hayfever, i get the asthma instead. Sometimes its like talking to a brick wall down at the hospital. They each treat the disease that is special to them, they treat me as a person. I've had more sense out of gp than the hospital at times. I don't know if i've done too much or if it is the rain that is coming in tomorrow. It is very warm here today that doesn't help either. I'm going to have a hot bath and get in bed.

I got two rise and recline chairs two years ago and the lady came to service them today and she brought this massage thingy, it was very good, got some relief from it. The cost of the thing put us off though. They are nearly £1,000. With only one wage coming in we can't afford that. Why does it cost so much to buy if it is going to help people like us. They say theres a living to made from the dead, well it seems theres a good one to be made out of the disabled as well.

Sylvia.xx

[LavendarLady]

Hi Sylvi. I also get problems with joints when it is damp and rainy, and of course, every other time as well. I also have asthma as well. I have a rise and recline chair - best thing we ever invested in - don't know what I would do without it on bad days when all you can do is rest. Have you tried social services for assistance with various items? I found them very helpful. They came and assessed me and fitted handles to doors and also gave me toilet seats to enable me to sit and rise without too much difficulty (sorry it is so basic!). It would be worth having a word with them. They also gave me a booklet which sets out what they can supply. I offered to pay but was told the service and supplies were free. Sometimes the Red CRoss can help with lending various items - worth giving your local depot a ring. Glad you didn't cancel your nail appt. I also find that makes me feel better just being pampered for a little while and my nails (of which I am very proud) look so good after. Many years ago in the dim and distant past, I used to be a hand and foot model, modelling nail varnishes, hand creams, etc etc. They would take one look now and run a mile!

My Rheumy treats the RA as do the nurses although he does ask from time to time how the Asthma is but that is left to my GP to sort out and is under control. Just gone down with a cold so feeling achy anyway,. Your hubby sounds lovely and supportive but you must remember rest is all you can do during a flare up. I think most of us push ourselves as hard as possible and then suffer for it afterwards. Sometimes I think we feel we cannot give in to it and try to carry on. I have just come through a bad flare up and ended up with a steroid injection on Tuesday which is settling it down (GP gets very worried about my bones!). Did too much over the previous few days as my cleaner away and I tackled the whole of the downstairs,, pulling everything out and cleaning behind, washing floors etc,. But I paid for it.

Keep your chin up gal - you are not alone - we are all here to help even just for a chat. LavendarLady xx

[sylvi in reply to LavendarLady]

Thank you. You've described me bang on. I'm just like that.I've got to start accepting what i can and can't do, which i'm going to have counselling on at the end of the month.

Just been to the docs for check up on the drugs he changed me to. He's happy with how i am today, but he did tell me that i can increase the tramadol-moral to 3 on bad days. I had a good night last night so though the pain is still very much there i don't feel so bad in myself. I've been shopping with the hubby, and noiw i've got too tired. So got to stop now until i go down the hospital this afternoon. Thats what i find frustrating.

Sylvia. xx

[Hidden]

pleased you are bit ..better I had guessed that the drug might be tramadol... up to three times a day is a normal dose.. pleased you can take it.. Im allergic(big time to it!)

are you taking anything like amitryptyline at night? as this could help with pain too.. particularly neuropathic or nerve pain.. dont over do it it dont do much shopping cos it can be very tiring.. just get bits when Im driving past a supermarket.

Im sorry about your poor eyes that is the final straw... asthma/ allergies do go hand in hand so hence the possible confusion.. i get more sense from the Gp too.. and the end of the day ..you the patient know your body best..

very best wishes

Alison xxx

[sylvi]

Thanks alison, back from hospital. Got to go back in about 2 months, sending app. I've had a bung put in one of the ducts on my lower eye to see how it feels. This is to stop the tears going into my nose, thereby hopefully keeping my eyes more moist. If this helps i'm to consider having them bunged up surgically at walsgrave hospital in coventry. He has only done one eye today to get a feel of what it'll be like if i have the op. If i go ahead it should mean not putting so many drops in my eyes.

I slept well last night so even though the pain is still there i don't feel so tired. Am a bit now as we had drs and then hospital. Gp says on bad days i can take 3 tramadol which is nice to know. Gp is pleased with me today. He is a really good dr. He knows what he is talking about and he doesn't bullshit you which i like.

Now just got to see bowel specialist on monday and hopefully thats me done until end of august.

Kind regards to you all who sent messages it helps to know when your suffering there's someone there who knows what i'm going through.

Sylvia. xx

[Hidden]

ooh you poor thing but you are slowly getting there.. some ra dmards can aggravate the bowel/ cause ibs.. but interestingly inflammatory bowel diease which is much more nasty than irritable bowel syndrome. has some cross over with RA.. some drugs used eg sulphasalazine are the same !.. went a evening workshop (pharmacy) recently after my afternoon morphine nap!! it was great.. case studies. team. work etc and I could really contribute due to my brush with RA.. as a lot of people there didnt know about blood testing. monitoring etc.. and susceptiblity to chicken pox due to steriods etc... huge cross over on drugs used IBD is an auto immune disease like RA

[Gina_K]

Great advise from all' Ll especially, I hope you feel better soon sylvie.