Consultant appointment-advice on questions to ask?

VeeTee
VeeTee Member Posts: 4
edited 16. Jan 2020, 04:15 in Living with arthritis
Hi folks!
I have my 4th consultant appointment soon and was hoping for some advice on questions to ask to help move forward on a formal diagnosis and medication to help relieve symptoms.
Symptoms started 18months ago (when I was 35) with stiffness in back, and then pain in my hip. As someone who ran multiple times per week, weights at gym, yoga, aerial and a workaholic, I put everything down to doing too much and being run down. Fast forward to last summer and I was referred to rheumatology for inflammatory arthritis, with psoriatic and ankylosing spondylitis mentioned but not confirmed.
Basically my whole body hurts. Eating and swallowing can be difficult and painful. Arms and shoulders sometimes don’t feel like my own. Back ache is constant. Hips are stiff and sore as are my knees and now one ankle and other foot’s toes are swelling and painful (first visible inflammation).
Previous appointments have not gone well - I’ve left upset and frustrated with no answers but I don’t know what to ask to move things along. This is my first appointment in 4 months and I’m due to get arthtogram MRI results (hip where pain started) and hopefully review anti-inflammatory meds (etoricoxib) and pain relief (currently morphine- gp prescribed it at Xmas -consultant doesn’t think I need pain relief and told me to stop it all). The edge is taken off enough for me to still work full time but other than that my life feels like it’s on hold. I’m maintaining a healthy weight (followed AIP diet- food is not a trigger) walk daily and do A LOT of whole body physio exercises, as well as some yoga and outdoor swimming / dunking. I feel like I am doing everything on my end to help symptoms but the constant pain and immobility and what I perceive to be a lack of support are wearing me out.
Any advice on questions or moving forward?
(Sorry for long post!)
Vee

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Diagnosing an auto-immune arthritis can be a lengthy process, there are around 300 auto-immune inflammatory conditions so it's a big spectrum to narrow down to one specific thng. I cannot remember anything I asked at my first appointment(whichwas back in 2001) but I do recall what I was told by the rheuma I saw who was heading for retirement: it didn't help me then and won't help you now. My psoriatic arthritis did not start as it traditionally does and is one of the sero-negative kind, which even just a few years ago was a hindrance in diagnosis.

    Due to my asthma (which began long before the advent of inhalers and is one of the auto-immune inflammatory disorders) I have never been as physically active as you so this must be very hard but you do need to listen to your body. Do not force it beyond what it can comfortably achieve, for whatever reason it is attacking itself, causing the pain and tiredness,

    It is worth keeping a diary of pain, inflammation and tiredness levels so that the rheuma gets a better picture of you and how you are being affected. When people without the health issues facing you tell you what you do or don't need to take etc. tell 'em to zip it. My rheumatologist is well-aquainted with the theory of arthritis and fibromyalgia but relies on me to explain the reality, my GP likewise with my osteoarthritis.

    I think there is a difference with my inflammation. The OA inflammation is localised to the affected joints I have overworked and can be shifted by rest, massage and maybe anti-inflammatory gel. Heat can help too. The PsA inflammation does not go, affects my whole body and the affected joints are hot to the touch - they require ice. Are your inflamed joints hot to the touch?

    Have to go. Having a very bad day. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,339
    edited 30. Nov -1, 00:00
    Hi Vee and welcome. I can't tell you what questions to ask and I certainly can't diagnose but, as someone who has had rheumatoid arthritis (RA), an inflammatory kind, for years and also osteoarthritis (OA) the non-inflammatory kind for a few years less, I do know a bit about it.

    They think you might have PsA or AS. Both of these are sero-negative types. RA, too, can be sero-negative but not usually. All forms of inflammatory arthritis can be difficult to diagnose. I was very straightforward even at 15 but it's quite normal for people to be on these forums for years with simply a diagnosis of inflammatory arthritis. Sometimes something will then happen which means a more specific type can be pinpointed but not always.

    I'm sure this matters to you right now but, really, in terms of treatment, they're all treated with the same meds – DMARDS (Disease Modifying Anti-Rheumatic Drugs) so it's a bit of a surprise that you're just on celecoxib, an anti-inflammatory. That might deal with the symptoms but won't really hold back the disease. It sounds as if the consultant might not be convinced that yours really is an auto-immune (inflammatory) form of arthritis. With luck, the MRI scan will help to determine this.

    I'm finding some things you say quite hard to reconcile ie “Basically my whole body hurts. Eating and swallowing can be difficult and painful. Arms and shoulders sometimes don’t feel like my own. Back ache is constant. Hips are stiff and sore as are my knees and now one ankle and other foot’s toes are swelling and painful (first visible inflammation).” but then “walk daily and do A LOT of whole body physio exercises, as well as some yoga and outdoor swimming / dunking.” Now I'm an exercise bore on here. People must get sick of me banging on about it but it seems to me that, if you are in all the pain you write about yet still doing all the exercise you write about and need morphine to carry on as you are, then, maybe, you're doing too much. Is it a physio who understands about inflammatory arthritis who has prescribed them all? Or are you just assuming you can 'work' your way out of pain? We can't. Exercise is vital but it must be the right sort at the right time. Ask your consultant about how much you should be doing and what type.

    I hope I've been able to give you some food for thought. You may be prescribed DMARDS but, if so, don't expect them to work immediately. They can take up to 12 weeks and they're given to hold back the disease not to stop pain. They should ease it somewhat though there's no guarantee.

    I can understand your consultant's attitude to morphine. I've only ever had it post-op. If we use the 'heavy guns' routinely then where do we go in an emergency? I prefer distraction, gentle Range of Movement exercises when flaring and strengthening ones when not. Easily said but it does take a long time to achieve.

    I hope you get some answers at your appointment. When is it? Do let us know how you get on and, if you've any questions, either now or then, fire away though we can't promise to be able to answer them.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi VeeTee,

    So you have an appointment coming up with your consultant, you have widespread pain and you are struggling to keep up with life as you knew it.

    My first suggestion, as strongly put as I can, is take someone with you. Tell them how you are affected, what you need them to do to support you, hopefully then you will be able to review your appointment and move forward.

    I’ve got a link from our website www.versusarthritis.org on managing your symptoms which might offer some help

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/

    For now it seems sensible to moderate your activity - you work full time so you need energy and brain fully functioning there. If you give your body some down time by reducing the amount and intensity of your exercise regimen you might some of your symptoms improve which would be useful information for your appointment and as you work out how to help yourself.

    You are allowed to ask for a second opinion, talk it over with your GP, which might be useful if you and your current consultant can’t work together.

    The pain diary is good, my GP suggested it and it did show some links I’d missed - I do it even now if my symptoms change and I can’t work out why, I also use the versus arthritis website to remind myself of pain relief without medication, distraction techniques etc

    Let us know how you get on

    Take care
    Yvonne x
  • VeeTee
    VeeTee Member Posts: 4
    edited 30. Nov -1, 00:00
    Thank you everyone for your replies! I’m trying to readjust my thinking to accept my new reality but i know it will take time to adjust and time for a more specific diagnosis.

    As far as concerns about exercise go, I’m doing the physio exercises Ive been given (physio has worked with PsA, AS,RAand OA and has about 40 years’ experience) but because I have whole body issues there are a lot. They are always done well within my capability (took me months to accept this!) and at times of the day when I can do them more easily, and I vary them to cover whole body over the course of a few days. I cannot stress how gentle they are - I never do them to a point where I will cause damage.

    My pain is rarely excruciating, but constant with stabs depending on what I’m doing: worse in mornings and evenings. Stiffness too is worse mornings and evenings, basically if I stop moving I seize up. Exercise and movement keep me a bit more loose so I try to keep moving- I’ve never slept so much in my life as a consequence! I don’t push anymore, whereas my old habits were always about pushing barriers!

    kept pain diary on and off - No correlation between general day to day exercise and pain/ stiffness, and it helped me to rule out diet related symptoms. Rheuma dismissed it at last appointment but will perhaps start again and push for her to pay more heed to it.

    I know I’m my own worst enemy. I’m doing what I feel my body and mind need- working and gently exercising-but I don’t think I can accurately convey the pain and distress I feel. there seems to be an assumption that if I can do these things it mustn’t be that bad. My GP and nurses saw me weekly for months for blood tests and check-ups so they could see the deterioration and impact that a consultant can’t by the nature of their appointments.

    I have tried not taking painkillers - I’m left more immobile and incapable of driving safely. My GP prescribes my pain relief - rheuma doesn’t know about morphine yet. The anti- inflammatory meds are the key things holding back symptoms (I’ve tried coming off them too, just to see if they are doing anything - they are) but just not as much as I hoped.

    DMARDS- first rheuma ordered all the tests for methotrexate and talked about starting it (good to go) but have then seen a diff dr.

    Inflammation- markers are consistently elevated with no impact from meds, but only visible inflammation is recent- and warm to touch.

    I’ve been waiting 4 months for this appointment so I’ll be bringing a notebook with all my questions and writing down everything! You have given me a good few things to think about - Fingers crossed something new is on the horizon!
  • stickywicket
    stickywicket Member Posts: 26,339
    edited 30. Nov -1, 00:00
    Adjustment is an ongoing thing, Vee. We all have to do it all the time. Life with arthritis is never static or boring. There are always lots of barriers still to push and others to think about, perhaps modify our behaviour or perhaps concede the battle in order to win the war.

    It's good that your exercise regime is in the safe hands of a physio. Does the physio approve of the yoga at the moment? And the outdoor swimming / dunking? Even the walking on top of the exercises? Although yoga, walking and swimming are all definitely recommended for arthritis I'm not sure if they're OK when flaring.

    For most of us on here pain is a constant. We just have to find an acceptable level.

    Good luck with the appointment.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I suspect that, like all healthy people, up until now illness has always been a temporary but extremely annoying blip to your usual carefree, energetic existence. Arthritis of any kind behaves differently. It does not go away, does not get better either of its own accord or through medical intervention, nor by changing diet, takng supplements, wearing copper, exercising more. It brings permanent change to how we live life but does not have to change what we get from it. Therein lies the challenge and skill of living with arthritis. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • VeeTee
    VeeTee Member Posts: 4
    edited 30. Nov -1, 00:00
    DD- I love your statement- It brings permanent change to how we live life but does not have to change what we get from it.

    Yes, physio is happy with other exercise - even giving me extra movements to offset neck and back stiffness Swimming and walking can bring!! My yoga teacher is very supportive and doesn’t bat an eyelid when I move out of poses and just sit or lay down (or miss classes!) It’s yin, so slow, but great for de-stressing and relieving tension. Once I would have dismissed that type of class, but I’m learning.

    V x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Sometimes I surprise myself: that statement was a doozy! :lol:

    I am having a rough time at the moment but so what? It's the nature of the beast so why waste precious energy fighting and railing against it? I know that the better I deal with it the sooner it will pass. My worst time was when I was without meds for a few months and this ain't that. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben