Deteriorating rapidly

ouchpotato

Hello all

I know I've been moaning a lot lately, but I seem to be deteriorating at quite an alarming rate over the past couple of weeks. I'm in pain constantly, rather than intermittently, and my mobility is suffering. The pain I do have is also spreading to previously unaffected joints. I'm kind of ok with that, I know arthritis is never likely to get better and it's a given that it will get worse. What I am having trouble with is the speed with which it is progressing. Today I walked to the school to pick up my daughter from school, such a short walk you can see the school from the house, and hurt almost as soon as I started walking. We came home via the shop (on the way) and I had to sit on the chair in the shop before attempting the rest of the journey which is pitiful as it is about a 3 minute walk each way. The pain in my spine, and my knees and hips just overwhelmed me. Added to that my right arm is really bad, not just my elbow but my shoulder and forearm too, making it weak.
I'm sorry for the moaning but it's actually scaring me the speed of the deterioration.
Thanks for listening.

x

dreamdaisy

I dislike sounding unsympathetic because I am not but I wonder what is deteriorating: you or your ability to cope? After seventeen years of this I know that when things get worse I initially feel defeated and demoralised but then I adjust to the new lower standard of what can be achieved and make do. I also know that I am fortunate in that I have only his and my needs to consider. You obviously have more on your personal plate than me. I cannot remember and I apologise :oops: but are you using any aids to help you get around? They do make a difference. DD

ouchpotato

Hi DD, you never sound unsympathetic! No, my pain levels are definitely rising and affecting my ability to do things but yes...quite possibly it is overwhelming me too.

I am a single mum of 3 so yes, sometimes it's a lot to deal with but having said that they are older...19, 16 and 9.

I use a stick, and find it invaluable but I am guilty of thinking that just because I feel ok-ish when I leave the house then I will stay ok and so I leave it behind, then suffer when I am out. I need to get into the habit of bringing it with me as a matter of course. I also bought a shopping trolley so I don't have to carry shopping and it is brilliant (very snazzy too...pinks and purples Aztec patterns).

I think I am just having a self pitying phase.

x

dreamdaisy

I hope not (and thank you) but I won't faff about with platitudes.

Hon, we all do that from time to time. A quick dip into the shallow end of the TPoSP (the pool of self-pity) does us no harm whatsoever but if we decide to linger and wallow . . . . . Nah.

I have crutches and a rollator, for me it's one or the other because it depends on what I have to do. Yesterday we had to go to our neighbour's house so that meant the crutches (for all of thirty yards and some steps too) but if I am going into town then I need the wheels (and the seat). I am a good few years further on than you, and am used to making these choices, but initially it was not easy. DD

ouchpotato

DD, I have thought about crutches, thinking that maybe they would take some of the strain from my hips and lower back. The problem is my elbow, not sure it would take it. I guess the only way is to try it and see.

I always appreciate your no nonsense advice DD. And I never wallow for very long, I hate the feeling. I just need to adjust to this new pain level and then I'll shake it off again.

Take care

x

thistlegirl

sorry to hear you are having a tough time ouch. if you can't slow down is it time to try some stronger meds?
I personally like crutches over sticks as I feel it is easier on my wrists. Your shopping trolley sounds very cool!
My suggestion is to make an appointment to see your gp to discuss things? Hopefully they can help you immediately or if needed they can refer you to you consultant again. Hopefully it is just a hiccup but if things are going to be like this for a while you want to make sure you are getting any treatment/help you needso you can look after your family.
I can't remember if you have RA or OA?
my belief is if I am struggling to cope with day to day tasks then it is time to ask for help- took me 30 years to ask for help but it is getting easier now!

Jenny

hileena111

Hi Ouch
I'm sorry you are struggling so much......You have so much more to cope with then me.....there are only the 2 of us.....2 kids grown up and away.
I find crutches invaluable. I have a 4 wheel rollator {and a scooter which rarely gets used these days} The crutches are easier to cope with and they give my back a lot of support....a stick I discovered is no good.
Have you a physio? Or is there any chance you could ask the GP to refer you and just ask for a couple of crutches {well ask their advice} and at least you could try them and see how they worked for you......if no good well ........they can go back.
What about the stress you have been going through? is that adding to it?
I think its time to visit your GP anyway.
pm me if you want to
Love
Hileena

dreamdaisy

Hello, I hope things are feeling at least a little easier today. I prefer crutches to sticks because they give far more support. I remember a physio explaining to me that they are to be used for balance and stability, not to support your entire body-weight. (I was lucky, I was taught how to use them rather than just being handed a pair and left to my own devices.) The cuffs do not interfere with my elbows and my wrists behave because I use my leg and back muscles to keep me vertical (they hurt but at least they're working). Ideally you should be measured - if you have a disability aids shop nearby who stock crutches then pop in and ask to try a pair - yes, a pair. One is OK but two is far better because you can use them alternately - left leg forward with right crutch then right leg forward with left crutch. DD

ouchpotato

Hello everyone. I have climbed out of the self pity pool and am once again putting up a fight against getting down about this - thanks to DD and her tough love

Jenny, how are you? I feel I have nothing to complain about next to you! But so far I have OA in several places and a ruptured disc. I am still being investigated for an inflammatory arthritis too, probable AS.

Hileena, I am still waiting for a referral to the physio, as well as the pain clinic and an MRI. The fact that I have heard nothing from any of them is making me slightly concerned that the rheumy has just forgotten as she was massively distracted at my visit. I do like using my stick but I find that it causes awful pains in my shoulder blade so perhaps crutches is the way to go, to at least evenly distribute the load so to speak.

DD, yes we have a couple of such shops here so I may go in today and ask to try a pair and see how I get on.

Sun's shining everyone!

x

LignumVitae

Well done for getting back up to fight for another day. I think it's fine to have down days, you wouldn't be human if you didnt. My way of coping is similar to ThistleGirl in that, if I'm struggling then I need a plan of action as to how to make things better. That can be little things like making sure you take your stick etc even if you don't think you need it at first (never hurts to have it there) but it can also be bigger things. Ring your Rheumy, ask the secretary if you have had your referral processed and then call physio or the pain clinic (or both) and ask for a timescale. You will feel better knowing where things are up to and at least removing that concern from your list. If arthritis has taught me one thing, it has taught me the value of making a plan of action to cope better. Please don't keep struggling, get in touch and ask them for help, tell them things feel bad and you need some help. They will listen.
Good luck and I hope you continue to feel better today.
LV xx

bubbadog

Hey Ouch, I'm with the majority walking crutches are a god send, there are a couple of different types so it's finding the best for you. Can't you get in touch with the Occupational Therapist 1st to try out some crutches? it would save you some money. :?

ouchpotato

LV, I took your advice and guess what? I was right!!! The MRI hasn't even been requested yet, and that is supposed to be done electronically straight away! And the referral to the pain clinic hasn't been done either! Honest to God :roll:

I KNEW the rheumatologist was distracted and wasn't 'with it'. The secretary was very apologetic and said she will get the rheumy to request the MRI as urgent as I have been waiting a month already. The pain clinic...who knows?

Bubba...can you self refer to the OT?

x

ouchpotato

Scratch that question Bubba, I have just filled out an online self referral to OT.

x

barbara12

Hello ouch
Sorry you are in so much pain,I was going to suggest being referred to a pain clinic, but see you already have but not seen them yet...you go along to your GPs and make sure you are heard...let us know how you get on..

hileena111

Hi Ouch
If you have been waiting for anything for a bit longer than you think you should.....always ring and ask to speak to that particular persons secretary.
I've found secretaries to be very helpful.....my Orthopaedic Surgeon, My back Specialist, and eye specialist.
All of their secretaries have been great.
Pain clinic I haven't needed to follow them up....it was fairly quick.

Good luck with everything

Love
Hileena

dreamdaisy

Hello, how are things today? DD

ouchpotato

Hi DD, things not too bad thanks. Physically still a bit of a wreck but mentally feeling better and that's half the battle!

x

thistlegirl

hi ouch, good to hear you are happier. Have you got an gp appointment yet, may be helpful to see what they can do.
The sun is out up here, it always helps me feel better, I cant wait for spring to arrive!
I am doing ok, lots of waiting around for tests and results like you are.
Don't feel bad about moaning, we will always have stuff thrown at us in life and it doesn't matter what other people are dealing with. You have survived things I couldn't imagine and you have raised some amazing kids as well.
We need to get your joints sorted so you can get on with things- how is your book going?

Jenny