Here we go again

stlucia

It's all getting really bad again. I can barely type and oh I just want to have all this pain taken away. I don't know what to do with myself. I feel totally rock bottom and I just can't see a way forward.

marion1952

Oh Stlucia - you can't go on like this! Have you been in work today?

Marion

annie_mial

Oh lovey, we've all been there.......on here there are only words to help you, but all the love and positive thoughts might lift the gloom just a little bit. ((((((((((())))))))))) to help you along.

Annie
xx

stlucia

Thank you both. I am waiting to see my consultant to hopefully try the anti tnfs. I just don't know how much longer I can wait.

ironic

Oh I am so sorry that things have gone back for you.
Have you been into work?
Back to the chocolate and awful TV I think.

Is there no way that you can get seen any sooner?

Lots of gentle hugs flower.

I know you can get through this. Hang on in there.

Lv, Ix

stlucia

Thank you very much. I don't know how I can get an earlier appointment as my gp has already written to the consultant asking for him to see me asap.... but as yet no clinic letter.

I'm not sure if it is worth going back to the gp even as I'm on the top dose of mtx and already on nsaids, amitryptaline and codiene.

Thanks for the encouragement. Really helps.

Hope you are okay x

ironic wrote:

Oh I am so sorry that things have gone back for you.
Have you been into work?
Back to the chocolate and awful TV I think.

Is there no way that you can get seen any sooner?

Lots of gentle hugs flower.

I know you can get through this. Hang on in there.

Lv, Ix

ironic

Might be worth a try with your dr. He could give them a ring just to make sure that you are on the list. It could just jog them into action.

I rang up the hossie and managed to bring my appointment forward so it might be worth a try.

Ix

skezier

Hi Stlucia,

Of flower I am sorry your having so much pain. A gentle ((())) an a lot of hopes for you.

I wonder if your gp could help you more with some tied over tablets to get the pain under control? I know he will waiting for the rumo BUT he could maybe give you something different to what you have to help you through to the appointment?

I think as has been said we honestly have been there as well. I know I have but one you have a bit of better control it will get easier so please don't think this is it for life. I did that for over a year and I know how bad it is then.

I wonder if ringing your rumo's secretary and telling them just how bad you are would get you an earlier appointment? Might be worth a try. I so wish I could help but sending another ((( ))) and more hopes. Cris x

julie47

Hi stlucia

how are you today? I hope you are feeling a little better.

I am sorry that you are in so much pain and I am sending signals to the appointment dept to get you one v soon.

Take care ,
Thinking of you
juliePF x

frogmorton

Good Morning Stlucia

I am sorry you feel soooo very bad at the moment

I do think along with one or two others that i would go to the docs in the state you are in so he can make a chaesse-up call -OR if you know the name of the consultant you ahve been referred to you could ring and ask for a cancellation at short notice.?

Love and hugs to you

Toni xx

janie68

St Lucia

As Annie says we've all been there so we know that the way you're feeling is horrible and you feel desperate. I'm afraid you are going to have to play the waiting game, the wheels of the NHS do not move quickly.
If you do get the go ahead to go onto anti-tnf's, then you have to wait for funding then the paperwork to be done,it can take a fair few weeks. i know I sound negative but that's the reality. I have been through it and I think if I'd known how long I would have to wait then I wouldn't have got so down about it. I agrre to phone consultant's sec to find out if a sooner appt can be sorted. In the meantime, can you have a steroid injection or infusion? This may help a bit for a while.
Good luck
Janie

dreamdaisy

You are struggling with an exhausting disease and an exhausting job, stlucia. Are you able to get any rest during the day whilst at school? Pacing yourself is an essentail skill for people like us, measuring out our energy one precious drop at a time, to ensure it lasts. Is there any way you could reduce your hours at school? I know it is a new post for you but I am worried that you are running yourself into the ground. Take care, take the pain dullers and rest as much as you can. DD

stlucia

Thank you so much for all your lovely replies. I am trying to get hold of the clinic but they just never pick up the phone - what use are they?! I will try the consultants secretary tomorrow if I can get her number from the switchboard as no doubt the clinic phone won't get picked up.

I am trying to rest each evening - by then I can't do anything other than sit down so I have to do all my computer work on the sofa. I am looking forward to an evening when I don't have to work. There is absolutely no chance in the day for a rest - I try to sit down as much as possible but it is a really outdoor-sy type of school so we are always outside and rushing around (in a very arthritic sort of way!)

I have made good friends this week with Deep Heat, Deep Freeze and Tubi Grip!

marion1952

Hi stlucia

Try looking the consultant's name up on the internet and see if you can get his phone number that way..

Are you using a crutch? Honestly, you might find that would help you get along.. you could play it down and say you've pulled a muscle or something..

Start crossing the days off to half term (sorry, I know it's wishing your life away, but sometimes I''ve had to focus on a date in the future and tick the days off and I have found it helpful).

Take care

Marion

stlucia

I will do just that over the weekend - I think that might help. Trouble is, that crutches end up putting lots of strain through your arms and hands which is where I have lots of trouble too. Maybe toboggan is the answer and then get my husband to pull me along!

I hope you had a good day.

I am going to try and give my hands a soak to see if that will help.

x

marion1952 wrote:

Hi stlucia

Try looking the consultant's name up on the internet and see if you can get his phone number that way..

Are you using a crutch? Honestly, you might find that would help you get along.. you could play it down and say you've pulled a muscle or something..

Start crossing the days off to half term (sorry, I know it's wishing your life away, but sometimes I''ve had to focus on a date in the future and tick the days off and I have found it helpful).

Take care

Marion

marion1952

Hi again

I have a lot of trouble (pain/swelling/stiffness/etc) with my hands stlucia and at Iris's suggestion I bought a champney's hot paraffin hand wax kit a few months ago (cost £40 from argos) and I have foudn it really helps soothe my hands.. One evening a couple of weeks ago my hands were so painful I just couldn't bear anything touching them, but just kept using the hot paraffin wax all evening (about 5 times) and it definitely helped. It is a bit messy, but worth it ..

Sometimes I massage Arnica cream into my hands before I go to bed, and then put my lovely soothing Isotoner pressure gloves on - and that helps (just a bit) too.

Hope you have a restful night..

Marion

dreamdaisy

How are you doing stlucia? Are you feeling any better? I hope so, but I reckon it's doubtful. DD

stlucia

Hello, I really wish I could say that I was better! Feel like my head is in a better place but the body is worse. Grr. Have got a really quirky walk going on much to the amusement of the children! I dropped things on the floor earlier and had to get them to pass things up to me as I couldn't bend down! How are you doing today? Xx

dreamdaisy wrote:

How are you doing stlucia? Are you feeling any better? I hope so, but I reckon it's doubtful. DD

tillytop

Hi Stlucia

Sorry, just come late into this thread now and wanted to say how sorry I am that you are struggling so much at the moment. Like a lot of us, I have been there so I really do understand.

The only practical things I can suggest are to do as Toni suggests and, when you finally get to speak to the consultant's secretary, say that you will accept a short notice cancellation appt if one becomes available. That way you might get seen quicker.

The other thing is have you tried Ibuleve Max Strength Gel (you have to ask for it at the chemist as it’s stronger than the normal stuff so is usually behind the counter)? Technically I don't think you should use it if you are already taking NSAIDs but I am and I do. I swear by it and get through tubes at a time at the moment. I find that it's particularly good for my wrists which I can then cover with tubigrip and I use it liberally on my knees, feet and ankles before I go out and carry it around with me to rub on as needed. I sometime perch on a bench in the street and roll my trousers up so I can rub it on my knees if I get into difficulties when I am out. A bit embarrassing but hey, if it helps... :oops:

Really good luck with speaking to the consultant Stlucia.

Thinking of you.

Love Tillyxx

julie47

Morning stlucia

I am sure the children don't mind picking things up for you. In fact it is a lesson to them to be thoughtful.

Hope that you have a good day today and you feel abit better.

JuliePF x

stlucia

Hey Tilly,

Thanks so much for the advice about the gel - I have got some (and also on NSAIDs) but when I used it in the past for my fingers it didn't seem to do very much but I will give it another go. Can you overdose on the gel?! I would need to put it on every joint except my back and neck.

x

stlucia

Hey Julie,

Thanks for your message. The children didn't even seem to notice that I had turned into the tin man yesterday! I think that they are too old to comment in an inappropriate way so they might just quietly understand I suppose.

Lots of rain here today....I am going to brave going into town whilst the shops are not so busy as it is my day off today.

Have a great day too.

x

julie47 wrote:

Morning stlucia

I am sure the children don't mind picking things up for you. In fact it is a lesson to them to be thoughtful.

Hope that you have a good day today and you feel abit better.

JuliePF x

tillytop

Hi Stlucia

Hope you are having a nice day off and that the weather is better for you than it is here.

Re overdosing on the gel - I only realised yesterday that the tube says use a max of 3 times a day, but I have been getting through it at the rate of at least 2 tubes a week for a while now with no obvious ill effects. That said, yesterday I used absolutely masses of it and felt quite sicky in the evening (and again this morning) but I have never found that before so I think it's nothing to do with the gel. I too use it all over (neck, shoulders, arms, elbows, wrists, fingers, knees, ankles, feet , toes) in great quantities.

It certainly doesn't make the pain/stiffness go away completely, but I find that it does help. I have tried some of the other anti-inflamm gels but haven't found them so good.

Have you had any joy getting hold of the consultant's secretary yet?

Love Tily xxx

stlucia

Hi tilly, I tried the gel, a volteral version and dissapointingly it didn't work and I ended up in a very sticky mess!!! It was quite funny though!

Tonight I have tried a slightly unorthodox method of pain relief.... fruit bread and a long talk to my husband about my worries and pain etc oh and a good dose of codiene!!!

Hope you are okay x

tillytop wrote:

Hi Stlucia

Hope you are having a nice day off and that the weather is better for you than it is here.

Re overdosing on the gel - I only realised yesterday that the tube says use a max of 3 times a day, but I have been getting through it at the rate of at least 2 tubes a week for a while now with no obvious ill effects. That said, yesterday I used absolutely masses of it and felt quite sicky in the evening (and again this morning) but I have never found that before so I think it's nothing to do with the gel. I too use it all over (neck, shoulders, arms, elbows, wrists, fingers, knees, ankles, feet , toes) in great quantities.

It certainly doesn't make the pain/stiffness go away completely, but I find that it does help. I have tried some of the other anti-inflamm gels but haven't found them so good.

Have you had any joy getting hold of the consultant's secretary yet?

Love Tily xxx

tillytop

Hey Stlucia - how are you doing today?

I tried the voltarol gel too and it didn't work for me either - strange really as my anti-inflamms (Diclofenac) are also voltarol and they DO work for me. The max strength Ibuleve is the one for me every time. Glad you could laugh about the sticky mess tho!

Hope your unorthodox pain relief methods did some good for you last night!

Still no joy getting hold of the consultant's secretary to move things forward?

Thinking of you.

Love Tilly x

frogmorton

Also wondering how you are dong Stlucia??

Love

Toni xx