New and looking for advice

ttmc
ttmc Member Posts: 27
edited 24. Nov 2015, 05:05 in Living with Arthritis archive
Hi all,

Been reading this forum with interest, some really helpful and informative posts!

I'm looking for some help and advice, but will try and give a bit of background too.

I'm a 34 year old male, currently not diagnosed with anything more specific than intractable left Achilles tendonitis and polyarthalgia by Rheumatology. I've had mobility / pain issues for the past 10 years.

I'm on Naproxen, codeine and currently also Prednisolone. No sign of joint damage in feet/ankles on ultrasound as of last year, and so Rheumatology didn't want to trial Sulfasalazine at that time.

I have fluctuating severe pain in both feet/ankles to the point where I cannot put any weight on the foot during a flare up - both feet have been affected, but luckily neither have been affected to the most severe extent at the same time. This means I've usually been able to use crutches to support my weight and move short distances inside favouring the less bad foot, although cannot stand or move without crutches.

I regularly work from home, and use Access to Work to get to the office when able to. I have a blue badge.

I also have pain in my fingers and knuckles, which has caused problems opening bottles, cooking etc but the pain in my hands has never been severe enough to stop me using crutches.

I'd say I'm at or nearer my worst 70% of the time - the rest of the time, although I'm very limited in what I can do and can only walk very short distances, I can sometimes get away without crutches and can use a walking stick - very rare though.

During my most recent flare up, I've been absolutely reliant on crutches from August up to a week ago, due to foot pain. Since August I've only left the house 3 times, all for GP appointments or blood tests. The rest of the time since August, GP appointments have been over the phone or home visits. I have also been reliant on my partner looking after me.

Since a week ago I have been able to manage a few steps without crutches, however now the pain in my hands and wrists has become more severe to the point where I cannot use crutches, or manage squeezing / picking up kettle / chopping etc.

I can luckily manage a few steps at the moment, however am very worried as I do not know what to do if my feet flare up again - which I can feel coming. It will leave me unable to stand or move due to pain in both hands and feet as I won't be able to use crutches.

I'm waiting for appointments with wheelchair services, occupational therapy and with Rheumatology. I'm also putting together a PIP application, although can't get to Citizen's Advice for help with this.

Does anyone have any experience of what to do if you are left absolutely immobile and unable to get from one room to another? Can hospital admit you via calling an ambulance etc?

My partner also needs to go away due to a death in her family, and I'm not going to be able to look after myself and again not sure how to proceed.

Bit of a long introductary post, just in a bad way and not sure what to do - any advice would be very much appreciated!

Thanks

Mark

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Mark & welcome to the Arthritis Care forums.

    It is a little quiet being the weekend, but I'm sure that someone will be along shortly to help.

    We are here if you need any support to do with using the forums. Many of the mods have some of the many varieties of arthritis and we all know about the feelings that go along with having it.

    Do read and post across the different topics that you will find here.
    All best wishes

    Mod B
  • PetiteN
    PetiteN Member Posts: 87
    edited 30. Nov -1, 00:00
    Hi Mark,

    I'm sorry to hear that you're struggling, I can relate to some of the severe pain and crutches issues, I hope things improve soon.

    I wonder if your local social services may be able to help you.
    They can carry out needs assessments, and sometimes urgently if support is needed quickly.
    I think this link gives some further details-

    http://www.nhs.uk/conditions/social-care-and-support-guide/Pages/assessment-care-needs.aspx

    I'm not sure what else to suggest, and sorry to hear you're having to wait for other appointments.

    N
  • ttmc
    ttmc Member Posts: 27
    edited 30. Nov -1, 00:00
    PetiteN wrote:
    Hi Mark,

    I'm sorry to hear that you're struggling, I can relate to some of the severe pain and crutches issues, I hope things improve soon.

    I wonder if your local social services may be able to help you.
    They can carry out needs assessments, and sometimes urgently if support is needed quickly.
    I think this link gives some further details-

    http://www.nhs.uk/conditions/social-care-and-support-guide/Pages/assessment-care-needs.aspx

    I'm not sure what else to suggest, and sorry to hear you're having to wait for other appointments.

    N
    Hi N,

    Thanks for that link and your kind words, it's nice to be able to talk to people who can relate to your situation. Sorry to hear that you have to go through similar.

    I hadn't seen the information on that link, although I have reached out to Social Services via the local council, and the Occupational Therapist from there is one appointment I'm waiting on. I had a similar appointment about a year ago to get some aids and a shallow step built, but since then 'dropped off the books' and had to refer again.

    After being reliant on crutches for so long, it's worrying not being able to use them now - I can only manage a couple of steps, and it's hard trying to figure out what to do before these appointments as my feet get worse again.

    Thanks and fingers crossed!
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    That sounds tough. It seems you are under the care of the right people who will understand your medical situation far better than I. I just have bog-standard RA and OA.

    You speak of walking aids and say you're waiting on wheelchair services. Maybe you could give them a ring and try to hurry them up given that your partner is about to go away. I've used a wheelchair indoors on a couple of pre-op occasions, just standing to transfer to bed or loo. I only have a very basic one but I propelled it with one foot. I've never, despite RA in most joints, been completely immobile apart from one Saturday morning when I literally couldn't get out of bed. My lovely GP came round, prescribed steroids and I was off

    Which brings me to another point re lifting the kettle. Virtually any kitchen equipment I buy I have to check first. I can only lift a very lightweight kettle with a side handle and I can only do that by getting my other hand underneath it. There are lots of aids to daily living in disability stores and even our own 'Ideas for making life easier' thread (above) has some good info. I find life is one long, ongoing process of adaptation and change and the more inflexible our bodies, the more flexible our minds must be.

    When did you last see a physio for exercises? They can make a big difference too.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hi there,

    SW has given some good suggestions there for you, which hopefully may help. I'm sorry things are so tough for you right now. Have you ever had physio on your Achilles tendon? I've had both mine operated on, and still have to do the exercises I was given.

    Before I got my own wheelchair we borrowed one from the Red Cross - I don't know if this would work for you? Also, I know you can get crutches on which you rest your arms - I can't remember what they are called, sorry.

    I hope you can get something sorted soon to ease things for you.
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Hi not sure how helpful this is to you, but I use a rollator/walker to get around as i find it easier than having to put pressure on crutches to take my weight.
    I find it very light and easy to push but also find it supports me well too, so i feel secure (as i also have a vertigo problem).
    My local wheelchair services were excellent in getting me fitted for and supplying a wheelchair, i suppose it depends on any backlog where you live, as to how long you have to wait.
    I understand your frustration with the Occupational Therapy Service as i have also had to go back to the end of the queue and it is 18 weeks long here!
    However they have never been anything other than wonderful, so it is worth the wait.
    I really hope you can get something sorted soon.

    Best wishes
    Hips
  • ttmc
    ttmc Member Posts: 27
    edited 30. Nov -1, 00:00
    Hi all,

    Thank you all so much for your replies.

    I'm sorry there are people in similar situations, but it's good to know you're out there to talk to and understand how things can be.

    It's hard to type at the moment, so I won't quote each post but I've read and really appreciated everything so far.

    I've been in touch with Wheelchair Services, OT, GP and Rheumatology again today to chase up these appointments and explained my GP is worried I could end up being admitted to hospital if I can't get the right care in place quickly from a Fast Response Team. Will see how it goes.

    I've also been in touch with CAB again about not being able to get to the appointment, and they are looking into what can be done over the phone - I also suggested emailing documents to them, so again will see what they can do.

    I've read the 'Ideas for making life easier' thread over a couple of days, and there's great ideas in there. I already have a shower gel with a hole cut in the top and toothpaste in a little plastic cosmetics pot so I don't have to try and squeeze the tubes, and was already doing a number of other things mentioned - I'm looking at travel kettles, microfibre towels, etc. It's impressive the things people come up with to help them manage! I know I certainly carry food, drink and other items from one room to another in a bag when I can, and regularly have a 'bum bag' on (inside at least) with phone, a little pair of scissors, tissue, drugs etc in it. I'm sure the fashion police will be round at some point :)

    I'm not sure about using a rollator/walker, as I need to put basically all my weight on the crutches and not sure if a rollator/walker would just 'slip away'. I'll see if I can test one with the OT. I'm also going to ask about gutter / trough crutches which you can use to support yourself using your arms rather than hands / wrists - and hopefully wheelchair services will be able to help with getting me fitted for and supplying a wheelchair.

    I've seen Physio / Podiatry / Chronic Pain teams a number of times over the years, and maybe it's time to revisit them when I'm a bit more settled to see if I can get any more benefit.

    It sounds like the waiting time for Occupational Therapy Services can be equally ... leisurely in many parts of the country, so hopefully we can all avoid dropping off their books in future!
  • PetiteN
    PetiteN Member Posts: 87
    edited 30. Nov -1, 00:00
    Hiya, you're welcome, sorry I couldn't be of more help, others have posted some great advice though, that's the beauty of this forum :-) Lots of great collective experience and tips!

    Haha the fashion police :-) well you have to prioritise don't you!
    Having said that, I made a slight error today wearing skinny jeans, not thinking about the fact im flaring and the busy day I'd got and how swollen my knees would be by teatime.. I had a slight panic getting changed into my pjs with my skinny jeans stuck on my legs! Somehow managed but it's not a dilemma I ever envisaged having at 33 years old!

    I use arthritic elbow (gutter) crutches on bad days, I find them really comfy, I bought mine online, I think they were £35 for a pair.

    I hope you hear back regarding your appointments and get the right support in place soon.

    N
  • emmaadams
    emmaadams Member Posts: 140
    edited 30. Nov -1, 00:00
    I cant really give you any more advice than what the others have given but thought id say HELLO !! and welcome to this wonderful forum ..:)

    I hope that you get as much help from the OT.GP.wheelchair services and everyone else you have contacted as soon as possible

    Emma xx
  • ttmc
    ttmc Member Posts: 27
    edited 30. Nov -1, 00:00
    PetiteN wrote:
    Hiya, you're welcome, sorry I couldn't be of more help, others have posted some great advice though, that's the beauty of this forum :-) Lots of great collective experience and tips!

    Haha the fashion police :-) well you have to prioritise don't you!
    Having said that, I made a slight error today wearing skinny jeans, not thinking about the fact im flaring and the busy day I'd got and how swollen my knees would be by teatime.. I had a slight panic getting changed into my pjs with my skinny jeans stuck on my legs! Somehow managed but it's not a dilemma I ever envisaged having at 33 years old!

    I use arthritic elbow (gutter) crutches on bad days, I find them really comfy, I bought mine online, I think they were £35 for a pair.

    I hope you hear back regarding your appointments and get the right support in place soon.

    N

    It's very true, I wish I'd joined sooner :)

    I know jeans can be a nightmare, I can have real trouble bending my feet to get them in or out - so if my feet flare up during the day, it can be grim trying to get them off. Luckily they are not skinny jeans, otherwise I think I'd still be stuck flailing around in them now! You don't expect it in your 30s and earlier do you.

    Really good to hear those type of crutches help you. I see you can get ones which are locked in one position, or more expensive ones where the angle is adjustable. Will have to get some :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have a range of aids to help me get around. I was lucky in that I was taught how to use crutches and only had one affected joint at the time, this was back in 2002 after my first synovectomy. It was drummed into me that they were there for balance and support and that they were not to be used as props. Now I have around forty affected joints, including my hands and wrists, but I still use them as taught for balance and support.

    I began with the bog-standard square rollator but, once that had proved its worth I upgraded to the newer L shaped design. This means that instead of walking just behind it and having to lean forward I walk between the Ls so my stance is upright. The hands rest lightly on the handles - no leaning allowed! I am hoping to try one called Let's Go Out - that even has suspension but I cannot find a stockist in my locality and don't like the idea of having to return it if it isn't suitable. My rollator has a seat, this means I can rest whenever I need.

    I bought a cheap wheelchair which is brought out on high days and holidays, I can either self-propel (briefly) or give The Spouse a cardio-vascular work out! I do not have much mobility but I am determined to preserve what I have. I am fortunate in that our house was once inhabited by a disabled couple so we have the wide doorways etc. despite the house being of some age. We have to find our own solutions to our troubles and that takes times - I am thankful that I am young enough to adjust my thinking, my late Ma was in all sorts of trouble with her joints but refused to use anything to help, after a healthy athletic life she couldn't believe that her body had let her down. Mine let me down from the word go! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ttmc
    ttmc Member Posts: 27
    edited 30. Nov -1, 00:00
    Hi DD, sounds like I've been using crutches to take all my weight when really I should have been in a wheelchair or looking at other aids.

    Sorry you're having so many problems for so long, it sounds like you do your best to keep mobile, and really who can do more than that!
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Mark so glad to see that you are getting so much advice from the forum...I have been on a few years now and I couldn't have manged without it..I haven't look at all your post so not sure if this has been mentioned but the are charity's that gives lift to hospitals ..has well as the NHS.....have you got a grabber..I have two since I had my THR and can pick things up with them as well has holding clothes to put on ie ..jeans..brilliant and my sock thingy ..save you bending down..you will get there anything else just ask...all the things can be got from social services..
    Love
    Barbara
  • ttmc
    ttmc Member Posts: 27
    edited 30. Nov -1, 00:00
    barbara12 wrote:
    Hello Mark so glad to see that you are getting so much advice from the forum...I have been on a few years now and I couldn't have manged without it..I haven't look at all your post so not sure if this has been mentioned but the are charity's that gives lift to hospitals ..has well as the NHS.....have you got a grabber..I have two since I had my THR and can pick things up with them as well has holding clothes to put on ie ..jeans..brilliant and my sock thingy ..save you bending down..you will get there anything else just ask...all the things can be got from social services..

    Hi Barbara,

    Thanks for checking up, it's a great forum. I didn't know about charities that gives lift to hospitals, will check that out. Taxis cost a fortune.

    I don't have a grabber but it's another thing for the list!
  • ttmc
    ttmc Member Posts: 27
    edited 30. Nov -1, 00:00
    Just a quick update for all you kind people.

    Luckily my feet haven't flared up to the point where I need to use crutches again, although my hands / wrists are still in the state that means I couldn't use crutches if I needed to.

    I've tried a week's course of Prednisolone which seemed to help a bit, and have had an Occupational Therapy home visit again to arrange some more equipment and a physio home visit to look at gutter crutches.

    My GP has said if my feet get worse again they can get a Fast Response team in for 72 hours to help with care, or look at being admitted to hospital, and they have told Rheumatology this in the hope it will speed things up a bit.

    Still waiting for Physio visit, Wheelchair Services and Rheumatology appointments. Equipment from OT should be later this week.

    CAB also were very helpful reviewing my PIP documents over email and talking things though on the phone.

    Finally, if people haven't tried using Google's speech recognition typing, I recommend it - it's been a life saver!
  • PetiteN
    PetiteN Member Posts: 87
    edited 30. Nov -1, 00:00
    ttmc wrote:
    Just a quick update for all you kind people.

    Luckily my feet haven't flared up to the point where I need to use crutches again, although my hands / wrists are still in the state that means I couldn't use crutches if I needed to.

    I've tried a week's course of Prednisolone which seemed to help a bit, and have had an Occupational Therapy home visit again to arrange some more equipment and a physio home visit to look at gutter crutches.

    My GP has said if my feet get worse again they can get a Fast Response team in for 72 hours to help with care, or look at being admitted to hospital, and they have told Rheumatology this in the hope it will speed things up a bit.

    Still waiting for Physio visit, Wheelchair Services and Rheumatology appointments. Equipment from OT should be later this week.

    CAB also were very helpful reviewing my PIP documents over email and talking things though on the phone.

    Finally, if people haven't tried using Google's speech recognition typing, I recommend it - it's been a life saver!


    Glad to hear that things are improving a little Mark :-)

    I'm going to investigate the Google speech recognition, perfect timing as I'm quite shattered this week.

    Hope the end of your week is going ok.
  • ttmc
    ttmc Member Posts: 27
    edited 30. Nov -1, 00:00
    Hi N :)

    Voice to text used to be terrible, but has come on in leaps and bounds.

    If you have an Android phone/tablet, the voice typing is just available on the keyboard within apps, you just need to press the microphone button. I use it quite a bit, and find it's pretty great.

    If you are wanting to use it on your laptop etc, then it's only available if you use Google's Chrome browser and have a microphone on your laptop (if it's got a webcam it will have a microphone!). You can use voice to search on Google by clicking the little microphone, and within Google Docs by going to 'Tools' then 'Voice Typing'.

    To be honest, I found the Google Docs voice recognition on PC a bit rubbish, but in general very good on phone/tablet using the Google keyboard.

    Windows 7 onwards also has its own speech recognition as well, not sure how well it works, so that might also be something to try out.

    Let me know if you need a hand!
  • PetiteN
    PetiteN Member Posts: 87
    edited 30. Nov -1, 00:00
    Hey Mark,

    Cool, I have an android phone so I'll give that a go!

    If I get stuck I might give you a shout!

    Hope you're having a good weekend?

    Natalie
  • ttmc
    ttmc Member Posts: 27
    edited 30. Nov -1, 00:00
    Hey Natalie,

    Awesome, I use voice search etc a lot on mine, and it does learn and get better over time the more you use it, so don't be put off to start with if it doesn't always recognise everything!

    Weekend is OK thanks, still in one piece haha :) How about you?

    Let me know how you get on, fingers crossed you find it helps.
  • PetiteN
    PetiteN Member Posts: 87
    edited 30. Nov -1, 00:00
    Hi Mark,

    How are you getting on now...?

    :)
  • ttmc
    ttmc Member Posts: 27
    edited 30. Nov -1, 00:00
    Hi Natalie :)

    OT / physio / GP / Social Services etc are bending over backwards to assist and supply any equipment they are able to. That all helps, but it's a clear diagnosis and treatment I need given I'm affected in so many joints. Just waiting on an appointment with Rheumatologist and Wheelchair Services.

    Also think it's time to look at a second opinion if it seems they are struggling with a diagnosis.

    So unless the potential strikes affect my appointment, it's the week after next - will have to see what happens.

    Hope you're ok and getting on with voice typing!
  • PetiteN
    PetiteN Member Posts: 87
    edited 30. Nov -1, 00:00
    Good to hear. 8)

    Yep a second opinion isn't a bad idea.

    It sounds like things are a little more positive..

    Once you get some appropriate treatment and better support I'm sure life will be on the up for you :-)
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Hi Mark,Ive just read through your posts sounded like you are really struggling ,I have RA and Lupus ,the lupus I've had for countless years the RA wasn't diagnosed about 6 years ago but I'm one of the lucky ones where as I'm well controlled with humira and hydroxy.Sounds like things are starting to come together for you fingers crossed that they continue.
    When you feel like it have a look at chit chat we have some laughs on there.Hugs (((()))) Mig
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi Mark, I'm sorry your suffering so much at the moment, I know when I had my bad fall and felt too unsafe on my crutches the O.T gave me a walker and yes at 1st I felt like an O.A.P but it has been much safer than crutches! I don't feel so petrified of falling and a lot more stable.

    I also brought my own wheelchair off Ebay, there are companies on there that sell brand new wheelchairs for extremely good prices and a lot of them do next day delivery or a couple of days depends on who you buy from. I brought one as a holiday wheelchair rather than taking my 'posh' one that Social Services gave me my grant for. I hope this may help you a little and I will keep my fingers crossed that you get your Rheumatology Apt soon.
  • bridlass
    bridlass Member Posts: 35
    edited 30. Nov -1, 00:00
    A couple of questions

    Is spondylitis a type of arthritis?
    If not how does arthritis in the spine feel?

    I am in pain in my spine (it's not muscular as it is only on the bony part of my back).

    I sometimes get gout in my toes and sometimes my right wrist locks and it can last for hours or days.

    I don't know much about it but pain keeps me awake at night and I could cry as my back, knees, ankles and back are so sore.

    Arthritis is in my family.

    Thanks in advance for any help.

    Bridlass.