When to accept your lot?

DaveOB
DaveOB Member Posts: 39
edited 2. Jul 2014, 14:40 in Living with Arthritis archive
Hi All

Had a frustrating rhumatolgy appointment this morning and am looking for some advice/words or wisdom....

I have PA and take enbrel and lefunomide. I am 38 and have had it for around 8 years. I have quite a lot of damage to my toes/feet and right hand/fingers.

The consultant said my bloods look good and that my inflamation levels look "excellent". At my request i also had an ultrasound done on my feet which shows no new activity, just a little tendonitis.

This all sounds really positive, and without doubt i am in better shape that i was before i started taken the meds. However i am by no means "normal"! Shoes make my feet hurt, i can't stand up for long periods or walk far without high levels of discomfort. My Hands still have some swelling on one knuckle and both get very sore if i do too much with them.

The consultant did not want to ultrasound my hands and has indicated that the damage already done is my problem. I asked why parts of my hands and wrists are painful where he can't see damage on xray and he just said the same again.

I feel like i want to understand my condition as best i can so i can manage it, i don't feel i can do this as i don't really understand what is going on.

Shoud i just except my lot or fight on for more info? Part of me feels i should get a second opinion. He made me almoste feel like there should be nothing wrong as i have no inflamation and he may be correct i guess?

Dave

Comments

  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    Dave, I think you're confusing 'acceptance' with 'giving in'. You have PsA and that's a fact. You are on the right meds for it and they are clearly doing their job as your inflammation levels are low. Does that mean you will be 'normal' and pain-free? Definitely not :roll:

    Pain is the continuo, the backdrop, the theme of our lives. It might wax and wane but it doesn't go away. And the effects of the disease, unless we get exceptionally lucky, do increase because damage has already been done. Have you read Arthritis Care's leaflet on PsA? It might help.
    http://www.arthritiscare.org.uk/PublicationsandResources/Arthritisbasics/Typesofarthritis

    Unfortunately, you get to stay in our gang forever :wink:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • barbara12
    barbara12 Member Posts: 21,107
    edited 30. Nov -1, 00:00
    Hello Dave
    I think you are right wanting to know all you can about your Arthritis, its not much to ask, but has for a second opinion you do seem to be doing well on the meds,apart from your feet ..that's such a shame they are so painful, so I do think you could ask to see a podiatrist about those feet to see if insoles are different shoes could help, but has for the pain it doesn't really go away just controlled has they say, sorry I'm not much help I am in the process of finding out what I have after 5 years :roll: hope you get some relief soon..
    Love
    Barbara
  • jen9432
    jen9432 Bots Posts: 37
    edited 30. Nov -1, 00:00
    Dave, I also understand your frustration and the need to know what is happening to your body. Unfortunately there are not always answers, even the doctors don't know everything. Your body reacts in unique and unusual ways to your condition and you feel it. I'm glad your pain is under control and managed, that is the most important thing in dealing with arthritis of any kind. The unknown is the harder part to deal with. I ask myself everyday: How will I be in 20 years, will I be able to cope, will I be in a lot of pain, will it get worse? will it get better? It's hard, we like to be in control of our own body but sometimes arthritis is a strategic foe and we have to accept that.
  • julian31
    julian31 Member Posts: 16
    edited 30. Nov -1, 00:00
    I was made to feel exactly the same way. Persist and get a second opinion.
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Dave

    You came away from your appointment disappointed in what you were told - you were not expecting miracles but you also want to know more and be able to ask questions. I feel you should be entitled to be able to do both these things. Did you go in alone to your appointment. It is useful to have someone with you. The other person remembers things that were said that you may not have or may have asked something you did not think to ask. The consultant will write to your gp I presume and you can ask for a copy from your gp if you are not already copied in to received the letters from your consultant. This may well tell you more. You could also discuss the letter with your GP......

    You are entitled to a second opinion.

    Elna
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • DaveOB
    DaveOB Member Posts: 39
    edited 30. Nov -1, 00:00
    Thanks for all the replies :)

    I know things will never be perfect, I just want to understand what's going on with my body. My hands still get very sore if I do something silly like Hoover or mow lawn, if it's not the joints what is it? If damage has been done to tendons etc in my hands I'd like to know so I can manage myself as well as possible.

    I have orthotics for feet, but my toes are curled over and the balls of my feet seem to of dropped in places. Had flat feet already so never been pretty down there :lol:

    I have an appointment next week with gp. Will ask him, but I am still tempted to ask to see another hospital. I am not impressed with the interest my current one shows!
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I can hear the disappointment and frustration but, alas, this is life with arthritis. Any form is degenerative and progressive but how that happens is as individual as us. I began the meds at a far too low a level, far too late, so have OA all over the place thanks to joint damage but so what? It's mind over matter - I've learned that I do mind but that doesn't matter. :wink: The meds do not stop the disease (let alone cure it) but they can slow its progression and this seems to be the case with you. At least we have access to the meds - for one or two on here they did not exist when their troubles began.

    I am 'lucky' in that I have never been blessed with good health, for me acceptance began aged 8 when I realised that my childhood was rubbish and would not improve: for those who have a better health background it must be far harder but I cannot understand how hard. :oops: I have tried both Enbrel and leflunomide but lef gave me blinding headaches and Enbrel tried to explode my liver; it appears that they are working for you which has to be a good thing. We need to learn to understand that our variations of 'good' news may not match that of others who don't deal with long-term health issues.

    I think there could be another factor in play here, namely your gender. Men like things to be fixed - masculine thinking can involve the following; this is the problem, so if I do A, B and possibly C then all will be sorted. My husband (who is not Mr DIY of the Year) is still insisting that if I do all that is required of me then things will improve because his experience is based on he falls ill, goes to the doc, takes some pills and lo! He gets better. Clot. :wink: I am not ill (I don't regard myself as being ill, I have arthritis, end of), I go and see some docs, I do all that is asked in taking their pills and doing their injections and lo! I don't get better because better does not exist, not for me. It's tough but true.

    Make the most of what you have while you have it. That's what I try to do even though my limitations are increasing year-on-year. No matter, it is what it is and it will do what it will do at its behest, not mine. It's not easy though. Far from it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Dave

    I understand how you must be feeling. You are young. If you understood what was going on with your body it would be "easier" to accept. I hope you get on with your GP. Have a chat with him and let him know how you feel. Discuss getting a second opinion.
    Knowledge is power. You would at least feel more in control of the situation.

    I wish you all the very best.
    Let us know how you go on.

    Elna
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Dave;

    I'm not a doctor, but it sounds like you want to know why you have symptoms that don't relate directly to joint pain? I have PsA too and have a lot of tendinitis-type pain. You could look up enthesitis and see if that fits what is happening to you. You should have received a better explanation from your docs.

    Enthesitis is inflammation at the sites of tendon ligament attachments to bone, usually near joints, and this inflammation is what causes the progression to joint arthritis in PsA. It also causes a lot of tendinitis problems, it's inflammatory but because there is little blood supply directly to the entheses, it doesn't always show up in inflammatory blood markers. It is typical of the seronegative group of arthritides. It's endlessly troublesome to me and I always have it to some degree, whether I'm in a flare or not.

    Hope that answered your question, but of course it's always best to have a doctor explain it to you and relate it to your specific case.

    Best wishes,
    Anna
  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    Anna has just given you a far better explanation that I could :) I was going to say that PsA does affect tendons so it's not surprising if yours are damaged. What can you do about it? Well, I guess it's the usual KBO :roll:

    When in doubt I find my GP very helpful and patient with me but, as for a second opinion, I just don't see the point. It seems to me that you have PsA, this is what it does and, although you are on the right meds and it's currently under control, damage done previously (Do I recall you writing that you thought you'd first got it 8 years before you saw a rheumatologist?) cannot be reversed.

    What to do? Get a balance between exercise and work, eat healthily, don't smoke. Maybe there's some info here that will help. http://www.arthritisresearchuk.org/arthritis-information/conditions/psoriatic-arthritis.aspx
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    It was thanks to a GP that I let things slide for far too long because, stupidly, I believed her when she said that things would sort themselves out. From my arthritic experience GPs do not know enough about auto-immune arthritis but, rather than admit a lack of knowledge, they are happy to fob us off with platitudes and pain dullers. My current GP does not interfere with my hospital-prescribed meds and my rheumatologist leaves my OA well-alone; she hasn't sorted the first so as sure as night follows day she can't deal with the other. :wink:

    Another thought: do you have the annual 'flu jab? I hope so because anyone who is on immuno-suppressant meds is supposed to have one on an automatic basis but I have to chase my surgery because they don't prescribe those meds. DD

    PS I have Achilles tendonitis in both heels and plantar fasciitis in my right under heel, probably all thanks to the PsA. I don't bother analysing, it's there so deal with it is my 'motto'.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DaveOB
    DaveOB Member Posts: 39
    edited 30. Nov -1, 00:00
    I think anna may of described exactly my symptoms. Will mention that to gp.

    I am honestly really grateful that the meds are helping, I have a young family and still manage to work full time. I just find it hard that there are lots of things I seem able to do, but pay a large price later. Having to rest and sharing a house with a 3 and 6 year old is not a good combo!

    I think the doctor just frustrated me, it felt like he couldn't be bothered to explain.

    My mum has RA and the meds simply weren't around when she was my age and she is in a terrible way, so I know what it can do and am thankful for enbrel every day.

    Off to slimmers world for the first time tomorrow to see if i can loose a few pounds to help myself too :oops:
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    You are doing all the right things to help yourself so I hope your first meeting at SW goes well. I understand the frustration with not being able to do what you once did - it's as though we age far too quickly and far too young, yes? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DaveOB
    DaveOB Member Posts: 39
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    You are doing all the right things to help yourself so I hope your first meeting at SW goes well. I understand the frustration with not being able to do what you once did - it's as though we age far too quickly and far too young, yes? DD


    Yep! Agree with possible gender issue to :D
  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    DaveOB wrote:
    I just find it hard that there are lots of things I seem able to do, but pay a large price later:

    Arthritic life in a nutshell :roll: Don't ask too much of yourself, Dave. You are working hard to support your family. Good for you. But remember too that you're not Superman (except to your children :wink: ) You can't fix what is lost but there is no reason to suppose you will end up in as bad a way as your Mum. Time, and treatment, has moved on.
    Well done on joining Slimmer's World. That could make a difference. I do hope so.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I am fortunate in that I am female and deliberately childless - I have to look after my husband (who's out of the house for 12 - 14 hours during the week) and me but that's it; mind you during the bad times that's sometimes too much. :roll: The pressures on you are far more demanding, pressing and urgent but I hope you won't let yourself be bullied by the arthritis. We have to learn that any effort we make over-and-above our capabilities will usually lead to some form of payback, I know to factor in at least one written-off day following fun (and maybe two) and that makes my life easier to deal with because I know what's coming.

    What do you do? I'm sure you've probably mentioned it before but I cannot remember if you have. :oops: Does your employer know what's going on? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hello Dave,

    I am going through something similar in that I keep getting told that the damage has unfortunately been done and while (like you) my inflammation is down and they're trying to prevent more, I am left disabled by the havoc that the RA has already wreaked.

    In my experience, it can hard to work out what is active inflammation and what is pain and stiffness from the existing joint erosions. Best of luck with Slimming World. I had great success when I was on it and while it was predominantly female, there were quite a few men there and it was a great group. As hard as it is to shed weight when you're in pain due to arthritis, a healthy body weight evens up the load on your already sore joints.

    As for a second opinion, well it can't hurt and if it puts your mind at ease, go for it. I went for a second opinion a few years ago and ended up at a fantastic clinic which I am very happy with. Talking it through with GP may be helpful if you have a good relationship. I tend to find that non-specialist medics such as; GPs are useful for giving a more objective opinion.

    Take it easy.
  • DaveOB
    DaveOB Member Posts: 39
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    What do you do? I'm sure you've probably mentioned it before but I cannot remember if you have. :oops: Does your employer know what's going on? DD

    Hi DD

    I work in IT, so desk based thankfully. Just had access to work in to assess me and hopefully with get some specialist equipment in to help me with typing etc. I am also going through the equality act to get reasonable adjustments put in place. Luckily work have been very good. I have had my head in the sand a bit until recently, but my poor wife was under some much pressure i want to do everything i can so i have a bit more energy to help with the kids and family life.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Dave, if you have any more problems (which hopefully you won't!) I've been told that this website and their helpline is fantastic: http://www.equalityadvisoryservice.com/

    I'd be interested to know the speed of the Access to Work process. I am starting a new job at the end of July and worried because they won't assess me until I'm already in post, so I may be without a suitable workstation for a while.

    Let us know how SW goes. I am an old pro at it, so happy to offer any tips. I also know a great forum that shares all the tricks of the trade and tonnes of recipes.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Thank you for replying, Dave, luckily for me I was self-employed so had a very understanding boss. :wink: Your employers have an obligation towards you and it sounds as though they are doing the right things. My husband had a PsA-affected PA (he is in Social Housing) and his employers ensured that she could work from home on an increasing level when required: when it became four days out of five (but she was struggling with that) she retired, having given as much as she could.

    To my limited blonde mind (me who cannot use more than two features on her laptop or mobile) it would appear that IT could be an ideal candidate for this homeworking option. It does, however, take discipline; I used to work at home and I know that for a fact. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DaveOB
    DaveOB Member Posts: 39
    edited 30. Nov -1, 00:00
    Starburst wrote:
    Dave, if you have any more problems (which hopefully you won't!) I've been told that this website and their helpline is fantastic: http://www.equalityadvisoryservice.com/

    I'd be interested to know the speed of the Access to Work process. I am starting a new job at the end of July and worried because they won't assess me until I'm already in post, so I may be without a suitable workstation for a while.

    Let us know how SW goes. I am an old pro at it, so happy to offer any tips. I also know a great forum that shares all the tricks of the trade and tonnes of recipes.

    Thanks for the link, access to work were really good. I reckon it took a good couple of months to get a visit though. I think it will take up to 4 months to get all the recommendations in place.

    Registered for sw, so may be asking lots of questions.... Of to work out how to max my sins :)
  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    'Turbogran' lost a lot of weight with Slimmers World. She kept us updated of her progress every week on Chit Chat and I think she found that helpful. I believe she's managed to maintain it too which is the other tricky bit. I'm sure she wouldn't mind a PM if you felt a few tips might be in order. Good luck!
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Hi Dave
    You shouldn't accept your lot in terms of getting the best treatment. But even with the best treatment we still hurt. If you feel you can get more/ better treatment.. do it. Best of luck.
    How am I gonna be an optimist about this?
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Starburst, I am going though Access to work at present.
    WhennI phoned I was asked a few questions to establish that I coukd apply, Nat Ins number etc, contact details and what my disability was, but not in any detail. I was told that someone from the processing team woukd contact me within 7 working days to check my eligibility.
    I recieved a call 5 working days later, was asked more questions abiut my disability and how it affects me at work and was tildI qualified and I was also advised to apply for PIP. As I work in education the school had to agree to pay the first £1100 of anything reccomended so the advisor had o get the go ahead first. He phoned me back the next day to say my head had given this and so he was passing my case to the agency that do the assessments. He explained I would hear back from them very quickly as they have to come out to the workplace and complete the assessment, write the report, make their reccomendations and get the report to Access to work within 10 working days. I recieved a call from them the same day, 1st July, and have my assessment next Wednesday. That's as far as I've got so at present it seems quite quick. Not sure how long the rest of the process will be but hopefully things will be in place by September. Hope that's helpful.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich