New to site suffering and would like a friendly ear

WoodyEngland
WoodyEngland Member Posts: 40
edited 11. Feb 2013, 14:51 in Say Hello Archive
Hello everybody brand new here just wanted chat to similar sufferers and obtain any tips and advise from people who know and deal with arthritis who won't judge me.
I'm 32 and a former soldier regular and territorial I suffered bad stress fractures in 2000 while serving and was diagnosed with ostio arthritis in my ankles in 2009 and have been suffering since 2000. I have had good days and bad and have noticed that over the last three Years my feet have gradually got worse, at its worst I am unable to stand at all and have really bad stabbing shooting pain all around my ankles which ends up with me on the floor grimacing and holding my feet I also have had to on many occasions move around my house on my hands and knees and go down the stairs on my bum and kind of monkey crew up the stairs in now getting to the stage where I'm limping and hobbling 247 I get proscribed pill but don't like taking then due to side affects and long term damage they may cause so I only take when I'm really bad feeling like I'm facing an impossible task as I'm struggling to loose weight I'm 5.8 and 14and a half stone and could always lose weight before by running which I can't do now had inserts fitted no help I receive some benefits as it was caused originally by the stress fractures but have since had most of that taken away and told I no longer required it even though my suffering has got worse. feel embarrassed with a walking stick so use a trekking pole it's now effecting me standing at work I feel lost in a black hole and sometimes sit on my stair case when I can't get down then looking at my military medals and pics and think was it worth it tried to contact the british legion but they didn't really seem to want to know or care thankfully my wife helps me a lot but I feel in sinking into a hole that I can't get out out and feel if it carries on ill have to start using a wheel chair and would lose my job feeling pretty dam low
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Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's good to meet you and I am glad you have found us. I'm having a rough day myself so won't be on here for long as I have to go and cook and that takes a deal of effort. I am female aged 53 and I have two sorts of arthritis, an auto-immnune one called psoriatic arthritis and the joint damage from that has resulted in OA in both knees and ankles. Altogether I have around 38 affected joints, including those in my hands which is why cooking hurts!

    You are talking to the initiated here, Woody, we know our stuff and are a friendly and supportive bunch. You say you are not getting on too well with the prescribed meds - what are they? There isn't much on offer for OA but different people react differently to different drugs and there may be other options out there you could try. OA is a very common disease (there are about ten million arthritics in the UK of which the vast majority have OA) and this works against us in terms of recognition and understanding (as you have found with the British Legion). Arthritis is not 'glamorous' and too many associate it with the elderly - some of our youngest 'members' on here are eighteen months old. Right, I have to go but I'll be back later. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • WoodyEngland
    WoodyEngland Member Posts: 40
    edited 30. Nov -1, 00:00
    I've taken diclofenac, ibuprofen, naproxen, and am now on co codamol which is making my head spin and making me feel aliitle sick
    E
    My wife also puts traxam gel on my feet when I'm suffering she's a great help but I feel totally useless and at the will of my poorly feet. In also worried that if I take pills every day it's going to effect my liver and kidneys in the future
  • WoodyEngland
    WoodyEngland Member Posts: 40
    edited 30. Nov -1, 00:00
    Also forgot to mention my pains at first where sharp shooting pains in booth angles feet at the back outer edge just below the bone that stick on the back outside of your foot it then spread to all the side of booth feet, then all around now its all around my ankles and in the dead centre middle feels like my bones are going to pop out lol ended up on the floor at the top of the stairs again last night in total agony tried to sleep with a hot water bottle under my ankles
    I've also started getting really tired and fatigued and am finding my self wanting to go to bed at 18:30! I can't go on like this I've battled this for years but its just getting worse
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Pain is a very individual thing, we all have our personal tolerance levels (one person's twinge is another's sheer hell) and codeine-based meds don't suit some so a chat with your GP may be of use - there are other options which you can discuss with him.

    I'm on diclo (and omeprazole) and OK, it doesn't get rid of that much but it does help to ease the worst. I'm on far stronger meds for the psoriatic arthritis but don't think about the risks, I need the limited benefits they offer now. Have you been referred to an orthopaedic surgeon? As for tiredness that is a common plaint on here, it's part-and-parcel of the disease and living with pain. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • WoodyEngland
    WoodyEngland Member Posts: 40
    edited 30. Nov -1, 00:00
    The army had me see many specialists and I had special inserts made to fit my feet made from rubber as my feet are quite flat it was hell wearing them its like cheese wedged in your shoes, they finally realised what it was when I had an MRI scan all my ankles where fuzzy on the pictures like a black and white tv not tuned in correctly and they then said there wasn't alot more they could do for me. I've been back to the docs three times as they said say would book me in to see someone else still heard nothing and this has been going on for we'll over two years they just don't seem to give a dam
  • rockchick
    rockchick Member Posts: 58
    edited 3. Jan 2013, 09:16
    Hi there. It's bad enough when this thing strikes, at any age, but when it happens as a result of just doing your job, at a young age, then it really sucks.

    I totally understand about the meds. People always seem worried about the stomach problems the anti inflammatories can cause, but you're right, they can mess with your kidneys, and raise your blood pressure, if you take them long term. A lot of GPs do tend to prescribe the pills and send you home feeling hopeless and isolated. Have you ever attended a pain clinic? Are you aware they even exist? Have you seen a physiotherapist? You mention inserts, but was that recently? Sometimes these things need tweaked, or changed, to find something that does suit you. Have you had recent xrays and blood tests? Do you have anyone at work you can talk to about your job? Can any changes be made to help ease things for you at work?

    As for your weight. That's the one thing which should seem the simplest to sort out, but I'm sure many people will agree, it's often the hardest. Yet it can, for lots of people, make a significant difference to their joint pain, depending how much damage has been done I suppose. But that's also something you might get help with. Many health authorities have schemes that can offer support, and the same with exercise. Running might not be an option now, but I'm certain there will be some form of exercise that you can do, even with your arthritis. You won't need me to tell you how the pain can bring you down physically, emotionally (depression could also explain your extreme fatigue, but do get that checked out); you exercise less, but you comfort eat, then it's a vicious cycle you can't seem to climb down from.

    You've probably heard all this before, and I'm so sorry. But you sound as if you've reached a real low point, and unfortunately, you will only find the help you need by seeing your GP and demanding any help that's out there.

    The co-codamol side effects might wear off for you, or a different dose might help. If not, there are always alternatives. If you have a good GP, he will listen to you, and understand your concerns. But you might have to kick up a stink to be heard, by some doctors.

    Best of luck.

    Just read your other posts. Definitely time for you to kick up a stink - get those referrals.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Ah, I have a new pair of orthotics and they are indeed sheer hell, especially as I cannot currently use my crutches due to carpal tunnel surgery.

    We have to repeatedly nudge and remind people about referrrals - I know I'm important but for my GP and rheumatologist I am one of very, very many. I forgot to mention I also take an anti-depressant (I wanted them as a short-term item but my rheumatologist wanted me to stay on them to help me cope with the pain and she is right in her reasoning).

    Right, I have to go and shift the wheelie bin (and hunt through the rubbish as I've lost a tenner. :roll: I'm working on the basis that if I don't it will be there and if I do it won't. :lol: ) Please post again on the Living with Arthritis part of the forum as more people look in on there and I am sure you will gather more replies. I'll be back later. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • WoodyEngland
    WoodyEngland Member Posts: 40
    edited 30. Nov -1, 00:00
    Unfortunately for me my local surgery is like some kind of circus show and they have had more receptionists in the last 3 years than I've had cooked dinners I've tried kicking up a stink but they really couldn't care less I totally ran out of meds a few months back as I was having to take them every day and was suffering my gp had said that I could phone up and obtain a repeat prescription and just call in so I tried do do this but was told I couldn't by an avert rude and ignorant receptionist and was told to make another appointment so I called in and got on my soap box so to speak infront of everyone else sat in the surgery and told them I was now without meds and couldn't be seen for over a week and was told I could just simply pick up my repeat prescription I was in agony and had to leave work early but she just sat there staring at me with a arrogant grin I tried to remind her about former and currently serving military personell who would be put to the front off all ques for treatment when injured while serving and that I was one of them and that I'd been waiting over two years to see a specialist and now I couldn't even get my repeat prescription she carried on smirking at me and then handed me a panflet which she had highlighted in yellow marker that this surgery didn't do repeat prescriptions which the gp had clearly said they did I made a few more remarks about how the surgery was a complete admin distaster and hobbled out very angry and upset and in pain, so I've kind on totally given up on them as they don't seem to give two hoots about me. I'm hopefully going to be moving to Australia this year and I'm pretty sure the hot climate will help me but I need to start eating the right things exersicing the right way that doesn't hurt me and slim down
  • WoodyEngland
    WoodyEngland Member Posts: 40
    edited 30. Nov -1, 00:00
    Any ideas to put me on the right track food did and don't fitness with feet that are broken loosing weight ect need to get back on track

    Thank you for you comments so far I really value them :0)
  • rockchick
    rockchick Member Posts: 58
    edited 30. Nov -1, 00:00
    Is there any chance of you changing doctors? It's a pain, but in some cases it can also mean you start getting treatment you need and deserve. In my experience, it's always safer to ask the reception staff about the surgery protocol, prescriptions etc. I'm sure it's not the same everywhere, but some doctors just don't have a clue about how a practice runs. If you can get the reception staff on your side, trust me, it will stand you in good stead. Sadly, the military angle doesn't seem to have the same impact as it once did, but don't get me started on that one :roll: Priorities are not what they used to be.

    If you have a look at some older posts on the forums, you'll see that lots of people have managed to lose weight, and found ways to exercise that suits their level of ability. I know it's not for everyone, but groups like Weightwatchers, Slimmers World etc do seem to work for many, and they are available online, if you prefer that. Avoid gimmicky diets. But seriously think about getting help from your surgery (this one or a new one). They may have a dietician who can advise you. Simple things like using smaller plates, reducing portions, having fruit or a few nuts, instead of biscuits/crisps. They can all make a massive difference. I just wish they could give willpower on prescription. I'd pay big time for that one :wink: Can you get to a local gym, for advice on the right exercise? Or contact a physiotherapist for advice. Do you swim?

    Good luck with the move, but do try and get as much help as you can in the meantime. If you are at a loss, try ringing the helplines here, it's costs nothing (number at top of page). Sometimes it can help just talking to people who understand.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hello from me, too. You've been given plenty of good advice so I won't duplicate it. However, with a chronic disease you really need a supportive GP so, if you have problems with your Health Centre, I'd advise changing practices. Several on here have done so with good results. Never allow yourself to run out of meds, though. It's one thing we must keep on top of, especially when things are rough.

    There are several people on here who have managed to lose a lot of weight including 'jillyb1' who lost 5 stones (I think) from a wheelchair. 'Turbogran' has currently lost a stone and is still going to weight-watchers and 'L1985' currently has a thread up on Living With Arthritis as she's seeking a 'weight loss buddy'. Arthritis Care has a booklet on exercises (though not intended for weight loss, simply maintaining muscle strength and range of movement).

    I wouldn't assume a hot climate will help your arthritis. I have RA and can't handle hot weather. If you haven't already done so, try a holiday there first.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Woody and welcome to the forum
    For a start I am glad you are getting things off your chest, it really does help to talk about things to people that understand.
    There are lots of us on here that have had a battle with our GPs, I ended up changing mine and got one that seems to understand what daily pain can do to a person.
    Im sorry but i haven't read all your post, have you had Xrays done to see what damage is there is.
    Have you seen a physio,I understand how you feel about the meds, especially the antiinflams, but you do have to keep on top of the pain and not wait till it comes on
    I am sorry if you already no all this, but hopefully you will stay with us, and keep talking.
    Has for losing weight, I am a great believer in low carbs and good carbs....nothing processed...brown rice, bread, try to cut out has much sugar has possible....and exercise sitting down till that foot is sorted.
    I do wish you well with everything and hope you get some help very soon.
    Love
    Barbara
  • WoodyEngland
    WoodyEngland Member Posts: 40
    edited 30. Nov -1, 00:00
    Hi Barbara I was diognosed with ostio arthritis in both ankles via an MRI scan it tuck years to even get a diagnosis I suffered for a long time without even knowing what was wrong a new gp might be an idea I'm glad people care enough to read my post and post back and I'm sure everyone on here has said this before (why me) I had my whole military career and I got stress fractures and now arthritis it makes me angry and upset that its stopping me do the job I've loved even the simple things like walking I did a walk last summer in the lakes great langdale pike I've done it before when I didn't have this and when I did it last year it tuck everything I had out of me and tuck forever I had people in there 80s passing me as I hobbled along with my trecking pole it just fealt imbarassing and I felt like an idiot at the fact that I really really struggled with a simple treck somthing which I loved to do I really do feel like I'm in a deep cave with no light and no way out people don't realise just how tough it can be
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    We uinderstand how you feel, we've all felt it before and I'm sure will feel it again. I never realised when I started using crutches post-op in March 2002 that I would never walk without them again. I hadn't thought that at the age of 53 I would be needing a four-wheeled walker to get about but I do and what a blessing it is. The only answer to 'Why me?' is 'Why not?' There are people younger than you on here, people older, people who have had it for the greater part of their lifetime.

    The only time I've used walking poles was earlier this year when we went to the Latitude festivel / mudbath in East Anglia. They were good at getting a grip in the mud but utterly useless at support which hurt my legs a great deal, as well as the wrists. One lesson I learned early on in dealing with (and living with) this malarkey that what I like, prefer or want are no longer relevant to my life: allowances have to be made to my diseases but I won't cede everything. We have to adjust how we do things and what we do, we have to pace ourselves, do a bit and rest a bit, and try not to put ourselves under too much pressure. It's not easy.

    Try googling The Spoon Theory and / or There's a Gorilla in my House. Both give clear explanations of how difficult living with arthritis (or any other form of degenerative condition) can be - they also make a good read for friends and family (who often fail to understand both the physical and emotional impact on us). DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I forgot to say (and I can't remember if anyone else has suggested this :oops: ) that ringing the AC Helpline (number on every page) may be a smart move: they are very good listeners and may well be able to point you in the right direction about diet, exercise and other matters.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • acheyaudball
    acheyaudball Member Posts: 28
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Ah, I have a new pair of orthotics and they are indeed sheer hell, especially as I cannot currently use my crutches due to carpal tunnel surgery.

    We have to repeatedly nudge and remind people about referrrals - I know I'm important but for my GP and rheumatologist I am one of very, very many. I forgot to mention I also take an anti-depressant (I wanted them as a short-term item but my rheumatologist wanted me to stay on them to help me cope with the pain and she is right in her reasoning).

    Right, I have to go and shift the wheelie bin (and hunt through the rubbish as I've lost a tenner. :roll: I'm working on the basis that if I don't it will be there and if I do it won't. :lol: ) Please post again on the Living with Arthritis part of the forum as more people look in on there and I am sure you will gather more replies. I'll be back later. DD




    DD hope you found your tenner...... made me laugh at least.
  • mike26
    mike26 Member Posts: 416
    edited 30. Nov -1, 00:00
    hi woody e
    welcome to site,you come to the right place, good honest info on here
    great bunch people. im new to site as well (1 week) ive got some idea what you going through like a lot of others here, mines Plantar Fasciitis
    & PsA .
    both of um stoped me from working im now 60 .

    maybe you could try swimming thatll tone & exercise ya body
    and graduley loose weight, like others av said woody dont be to hard
    on yourself. get yourself on right meds 4 u ,as i know now it can be done
    just hang on in there m8. mike26
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi Woody, how are things with you today? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kellerman
    kellerman Member Posts: 741
    edited 30. Nov -1, 00:00
    Have you tried SAFFA. I honestly don't understand why the Legion can't help.
    Many moons ago I was in the WRAF. Long before arthritis so I haven't had to ask anybody for help but I'd go for SAFFA if I did.
    Anything is worth a try. As for the losing weight I don't really have any helpful advice but if my mobility remains as it is I'll be looking to lose some myself.
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hi Woody

    It's lovely to meet you, but so sad to hear how awful you are feeling - especially as ex-military personell who ought to be being looked after in my opinion!!!.

    The good news is that you have found us, so at least know you are not alone now :)

    You have already recieved some excellent advice from the folks on here. My suggestion is though that you go back to the GP and take your wonderful wife with you to support you. Ask to be referred to an orthopedic consultant and start to see what if anything can be done. OA gets gradually worse, but in many cases there are surgical options. Maybe not in your case, but if you haven't seen an orthopod yet who knows?

    As for GPs surgeries :roll: I am so sorry, but mine can be pretty dreadful too to be honest - you have to 'learn the rules' and stick to them. Being a 2nd marriage my husband is at a different docs - he can ring for his repeat - and in fact should have had a meds review 2 years ago, but me :? I have to go every 6 months bang on :roll:

    Anyway main thing is that you are suffering and you need a plan of action to help. (co-cos make the world spin for me too....so I have my pain relief in patch form so it's released constanly at a lowish dose which I can top-up if needs be).

    Take care now and we will support you out of your cave and switch the light back on

    Love

    Toni xx
  • WoodyEngland
    WoodyEngland Member Posts: 40
    edited 30. Nov -1, 00:00
    Feeling abit better this week with my feet and my mind thanks for the msgs I think with it been the first week back in work last week after the break my feet really suffered and I was in real agony been at work standing on concrete floors I've been taking my meds again last week but only take them when I must as I really don't like taking pills as I said in previous msgs I'm hoping to emigrate this year to Australia I've been to hot country's before and it seems to have a really positive effect on my feet must be the lack of damp aire so I'm hoping this is going to help I don't want to go back down the doctors route now as I've been waiting far too long for them to sort my further specialist appointment anyway and ill have to have a medical for aus so don't want to trip my self up with loads of docs notes with my feet it's weird because sometimes I feel fit as a fiddle with no pains or limping then other days I'm stricken all I know is I can't fix arthritis I have to live with it so I'm on a mission to try get my self as fit as poss and loose the weight within 5 months as I really want me and my family to have a better life down under
  • WoodyEngland
    WoodyEngland Member Posts: 40
    edited 30. Nov -1, 00:00
    I also think swimming might be the way forward for me I've bought a push bike but when it's raining and cold the feet play up and it's not really an option it's just a shame it seems expensive to go swimming 2/3 times a week feeling alit more positive after reading the msgs and that people seem to actually care what I've been going through and the pain I've been in thank you for that it means alot to me well I have to hand all my military kit in this month as I've resigned my position as my feet couldn't cope anymore with the battering of infantry work so that will be a hard day but have to look forward and upwards my regiment had realised I was struggling and had side lined me for back office duties but it didn't feel right seeing my pals go off to war and me been side lined so I had to call it a day they dined me out in the officers mess as a lance Corporal which was great and they all hold me in high esteem it's just sad that arthritis had been slowly destroying my career but have to stay positive and think of Auss and my family I'm even toying with the idea of writing a book about my experiences the army the TA been made redundant 5 times my arthritis might make an interesting read evenif it only ever gets read by family, I'd be interested to know if any one has any good recepies for healthy food that doesn't set the arthritis off too :0)
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    It's good that you're feeling better this week. As you say, the first week back at work after a break is bound to take its toll and this causes stress which makes it all worse.

    If you like cycling, have you thought of an exercise bike? Weather wouldn't matter then.

    As for diet, I think it's generally accepted that a normal, healthy diet is generally good for arthritis. We all have our areas in which we feel some foods help and others hinder but there's no consensus. AC have a booklet on it if you look at the top of the page.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • arfaitis
    arfaitis Member Posts: 155
    edited 30. Nov -1, 00:00
    Woody, I live Batley area, and I know the British Legion rep well, and if you are in my area I will try and get him to see you.
    Obviously I cant speak for him, but I am sure he will be sympathetic to your problem.
    Arfa
  • WoodyEngland
    WoodyEngland Member Posts: 40
    edited 30. Nov -1, 00:00
    Yes that sounds like a good idea I'm still officially on the mod books until I hand my kit in which will be somtime this month but he may be able to advise me on certain things that I'm not sure about and any plan is better than no plan