So confused.

Hips12
Hips12 Member Posts: 62
edited 14. Jan 2016, 08:46 in Living with Arthritis archive
Hi everyone, and once again apologies for being AWOL recently.
When i posted last month i was having a really bad flare up which was dragging on and dragging me down.

As i type, the hip pain is a lot better at the moment, so fingers crossed it was just a particularly nasty flare up.

Yesterday i had the OT out as i have been really struggling to get my walker up the front and back steps, so need some half steps put in.
Whilst going through the paperwork in which i had to explain how my OA effects me in daily life, she asked if i had been tested for RA as she felt that my symptoms were pointing more to RA than the wear and tear of OA especially as i am effected both sides of my body, and it all occurred at the same time.
I explained that i had had 3 blood tests but nothing flagged up so i have never been referred to a rheumatologist.
In response she said well she wasnt a doctor and they knew best after all.
It has got me pondering about it again though.

Do you think it is worth bringing this up with my GP again?
I sort of dismissed it when she said "we HAVE ruled out RA haven't we" last time i saw her, as i just said "well you have done 3 lots of bloods and nothing showed up so we have accepted its not that" and we left it at that, but after what the OT said yesterday I'm all confused again.

So here are my symptoms:
Pain in my hips, shoulders, lower spine, hands, wrists, knees, balls of my feet ...both sides are affected equally ( although my right hip appeared more painful during the recent flare but when the pain subsided I realised it had affected the other side as well just the right had been more prominent as due to my vertigo problem i tend to lean more to the right)
The aching and stiffness doesn't wear off after getting out of bed, its more or less there all day.
I have boney nodules on the joints at the top of my fingers and on the knuckles but not at the bases, although they are achey too.
I have not noticed any "heat" or "swelling" as such though.
The balls of my feet are very sensitive to touch, they become painful if any pressure is applied, as in when my daughter does my nails and puts cream on my feet.
I struggle to get to sleep at night ...but that could be anything!

Congrats and thank you if you have lasted this far.

Could you compare my symptoms to yours, whether you have RA or OA or any of the other varieties, as i would like to see if it is worth taking this any further.

Many thanks to you all.

Hips x

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I'm sure you've read on here that there are two kinds of auto-immune inflammatory arthritis, the ones that show as sero- positive (rheumatoid factor is present in the blood) and sero-negative (it isn't). To have the former makes diagnosis easier but it's no so straightforward with the latter - I know that because I have one of the latter kinds, psoriatic arthritis, and my accurate diagnosis took years. My story is very different to yours, I began with a hot and swollen left knee. You mention no heat or swelling but neither do you mention any medication that you are taking - if you have a regular anti-inflammatory drug then that could be masking things.

    GPs do not know enough about this and there's no reason why they should - they are the ones who know a little about a lot. Even though your bloods have not been RF positive what about other markers? Were your ESR and CRP raised? These are measures of inflammation and there are other indications too but I am very tired and cannot recall them. I think you should ask for a referral to rheumatology because there could be a chance that something on the auto-immune spectrum is amiss and they know a lot about a little. It's worth checking, yes? I have a creaky foot in both camps, my rheumatologist ignores my OA and my GP ignores the PsA. Unluckily I can't ignore either. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Thanks Dreamdaisy i can always rely on you to talk some sense into me :)
    I am seeing my GP on 8th for an update on my meds etc.
    She put me on Meptazinol which worked well for my hips but didnt seem to touch the pain in my neck and shoulders at night, and as i have said before i get the sensation of "restless legs" down my body and can't sleep, so i chose to go back to the cocodamols which work on my neck and shoulders although i still dont manage to sleep until 2am

    I have no idea why such a strong painkiller only worked in one area!!

    As for the the markers, she just said the tests were all fine so concluded it was definately OA.
    As the blood tests were specifically to check for RA im sure all the usual tests were requested and all were normal.

    I WILL speak to her about referring me to a rheumatologist and hopefully then i can find out one way or another what this actually is.

    As the arthritis "came on" very soon, and not just in one area, after the shock of losing my husband to SAD, i have always felt it was my bodys reaction to the grief and shock and was more an autoimmune thing.
    I also have all 3 symptoms of sjorgrens ( dry eyes, dry mouth and dry "downstairs" :lol: )....not jumping on any bandwagon but the last one was brought up by the consultant after a bladder scan, the eyes were commented upon during a test for glaucoma ( " that will be due to your arthritis" she said ) and i have always suffered from an extremely dry mouth which i have always put down to my meds and inhalers.
    I never knew until the eye test that dry eyes were anything to do with arthritis, then when i looked it up and saw the other symptoms of sjorgrens i was pretty gobsmacked when i put it all together.

    Thanks again Dreamdaisy for your helpful advice.
    I do need to get to the bottom of this just in case we are missing something.

    It will be a while but hopefully i will be able to let you know one way or another after a thorough assessment in the new year.

    Please take care of yourself.

    Hips xx
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    If you've had three negative tests your GP might require some persuasion to do another. It's very disheartening to hear GPs talk as if the only kinds of arthritis are OA and RA. As DD says, some forms are seronegative but the blood tests ordered should have taken into account CRP and ESR levels. Why not ask your surgery for the results? Or at least have another chat about them with your GP.

    One thing – bony nodules are usually due to OA. Rheumatoid nodules are quite different, not necessarily near joints at all and are lumps of tissue, not bone, firm but soft and wobbly. I acquired the latest addition to my collection a couple of years ago :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • rayray
    rayray Member Posts: 115
    edited 30. Nov -1, 00:00
    Hi Hips,

    I am in the same situation as you but I do have a referral for a second rheumi opinion. I only got this because it was recently identified that the little patches of inflamed flaky skin I have had for over 30 years and I get for months on end around my knees and elbows is in fact psoriasis. It is so minor that I have always ignored it. Apparently the psa arthritic flares can start before the psoriasis but it is usually the other way round. My blood tests have always been negative for inflammation (also no rheumi factor) but I understand that they are likely to be negative for the sero negative types 50% of the time.

    It may all be bad luck for you and be lots of OA and the same goes for me. I am getting a second opinion because of the psoriasis which I didn't know I had first time around and also because a spinal surgeon is waiting to book me for surgery on my neck but is concerned the problem is inflammatory, which, if treated, could reduce the pain and may mean a different decision on the surgery.

    If it were me I would chat to my GP again. It sounds like you have a lot of joints affected and it may be that a rheumi opinion may help - they may do some x-rays which could help to distinguish which type of arthritis you have. It is difficult though as the rheumi may say they cannot diagnose an inflammatory arthritis at this stage and, even if you do have it, you will have to wait a while until the symptoms become more obvious.
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Hi everyone, and a very Happy New Year to you all.

    Thank you so much for your messages they have really helped.

    My GP, whilst convinced i have OA, has referred me to the Rheumatology dept at the hospital, so hopefully i will find out what is going on with me and clear my head once and for all ...or maybe not lol.
    I am just grateful that she is taking my concerns seriously and has referred me, but as is accepted with the nhs i have to wait a while.
    My appointment is set for 4th March.

    My OT was very efficient in getting my steps sorted so that has been a great help but also, subject to a feasibility survey, i have been accepted for a downstairs shower to be installed so I am delighted as i am finding the stairs very difficult now ( and due to my dizziness/balance problems they turned me down for a stairlift on safety grounds )

    One of the things my gp said was that because of the crepitus in my neck and shoulders it has to be OA, but i have read numerous articles where autoimmune arthritis sufferers also experience the grinding, crunching sounds of crepitus so more confusion.

    Finally ANY advice regarding sleep?
    I am not getting any sleep until 3 or 4 in the morning and it is driving me mad.
    If it's not the pain in my neck and shoulders and the subsequent restless legs, its because I simply cannot switch off.
    GP prescribed Amiltryptiline which are helpful in keeping me asleep once i eventually go, but still no help with actually getting to sleep.
    I have tried all the usual remedies, relaxation/sleep recordings milky drinks, heat pad, reading, watching something light hearted etc but here i am still awake at 5.20 am.
    Eventually exhaustion will take over and i will sleep half the day away!

    Anyway thanks again for listening and for all your help, you are all fabulous.

    I hope this finds you all doing as well as you can be and you managed a wonderful christmas.

    Hips xx
  • Megrose489
    Megrose489 Member Posts: 745
    edited 30. Nov -1, 00:00
    Hi Hips.

    So pleased that you've finally been referred to the rheumatologist. I have OA in various joints and also have hip bursitis and fibromyalgia. My sleep pattern was awful before my GP prescribed Nortriptyline. I often had no difficulty in getting to sleep, but would wake up later and stay awake for hours. The result was tiredness the following day, which you described. Sometimes, I would find it difficult to get to sleep at all, mainly due to pain in my hip bursitis and also restless legs. So, I would feel totally wiped out the next day.

    The Nortriptyine has really helped me. I take 25mg in the early evening. I sometimes have a bad night, but it's much, much better than it was. I believe the poor sleep is one of the fibromyalgia symptoms and, if I do have a bad night, my fibromyalgia pain is much worse.

    You didn't say what dosage of Amitriptyline you are taking. Maybe your GP could raise the dosage? Or you may want to mention it to the rheumatologist?

    I hope things improve for you.

    Meg
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    So, you have a rheumatology appointment. That's good since, as you say, it will settle matters as to whether or not you have an autoimmune arthritis or not.

    And the OT seems to have helped with some of the physical difficulties so that, too, is good.

    As for sleeping or lack of.....
    Hips12 wrote:
    Eventually exhaustion will take over and i will sleep half the day away!

    As Megrose has suggested, maybe a different painkiller going to bed might help if it is pain that is preventing you from nodding off. But, if it is a 'can't switch off' thing, I'd suggest you might need to re-train your body so that it knows when it's supposed to sleep.

    Having a bedtime routine is a good start but probably the only way it will work is if you simply don't allow yourself to sleep during the day. Set your alarm to allow for a reasonable amount of sleep and get up when it goes off no matter how tired you still are. Then stay awake – no dozing in the armchair :wink: – until a reasonable bedtime. You can then, gradually, put the alarm on for earlier in the day and go to bed later at night. It's a bit like jet lag. A certain amount of ruthlessness is required :lol:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Hi Megrose and Sticky' i hope you are both doing ok.

    I am on 10mg of Amitriptyline but my gp said to take 2 if im still having problems, but i havent dared take double as just the one makes it so hard for me to wake up in the morning...but then having finally dozed off at 6.20 this morning im getting desperate so i think im going to give it a go tonight ...she also said to take it earlier in the evening rather than around 9pm when i take my other meds so tonight im doing everything suggested to try and get a decent nights sleep.
    Before all this started i was happy to be in bed and asleep by 10.30!!

    Sticky' i have wondered if my neck and shoulders could be fibromyalgia too, especially as you mentioned the restless legs, so you can see why i just want to be seen and find out what is gong on with my body as it could be OA and Fibromyalgia with Sjorgrens thrown in for good measure!!!

    Thank you both again for taking the trouble to respond.
    I can "go on" sometimes but we all just want answers and the correct treatment to help us to live as normal a life as possible, and i dont believe being neurotic can result in the disibility and mobility problems i am suffering.
    (I once said to my old gp, "i know im neurotic" and she replied "yes you probably are" :lol: )

    Edited to add: i take 2 x 30/500 cocodamol when i need them but always take them at night.
    I have even bought a new bed which is supposed to support the joints.

    Hips xx
  • Megrose489
    Megrose489 Member Posts: 745
    edited 30. Nov -1, 00:00
    Hi Hips. Just to add that I take my 25mg Nortriptyline at 6.30pm and usually go to bed about 10.30pm. The rheumatologist told me to take it about 12 hours before I wanted to get up. This works well for me and I don't have the 'spaced-out' feeling in the morning.

    Take care.

    Meg
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Ah thanks for that advice Meg i will do the same.
    I haven't attempted much today, just rested really, so still amazed that i haven't dropped off yet, but keeping myself occupied with the online sales to stop the brain fuzz lol.
    I hope you are having a good Sunday.
    Im still trying to fathom where Christmas went lol.

    Hips xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    With a med such as amitryp it's better taken in the early evening rather than smack on bedtime. It takes some time to work on your system so that way you should avoid the hungover-drugged feeling come morning. I've never taken it but I wonder if that advice is included on the leaflet? Every med I have ever taken has a 'How / when to take this medicine' section. Try moving it to early evening and I hope it makes things better. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Thank you Dreamdaisy, i hope you are faring well and had a good Christmas.
    I guess im so used to just looking at the instructions on the box these days that i dont bother with the important stuff on the leaflet inside.
    I just said to the doc " this IS ok with all my other meds isn't it?" and left it at that. (Was concerned as i am already on the highest dose of my antidepressant, and i know that amitriptyline can be prescribed for depression also)
    I am going to try 2 tablets shortly and see how it goes tonight.
    I would be very surprised if i am still staring at the wall at 3am ...i HAVE to sleep sometime.

    I hope 2016 is going to be good to you.

    Hips xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Thank you for your best wishes, I appreciate them. My new year has gotten off to cracking start, not :wink: . Never mind, eh?

    I rarely read the leaflets because they all basically say the same (apart from growing another head and/or maybe turning blue) but I do read them when I am given something new. They can be, however, a useful source of reference on occasion and this might be one of those occasions. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Thanks DD and sorry to hear the new year hasn't started the best for you.

    The good news is I was asleep by 9pm last night, woke again just after midnight but went straight back to sleep, this happened a couple of times, but by 8.15 i was awake and having my morning coffee, not feeling groggy at all :-)

    Have made small steps in getting on top of the remnants of Christmas, but my hip gave way so now I am resting it for a while.

    Was it you who said you cannot stand for very long?
    I have the same problem as i get a bad burning pain in my lower spine after just a couple of minutes, so i have a "directors style" chair in my kitchen so i can sit and put the washer and dryer on as it is just the right height.
    Although my daughter is my Carer i do like to potter and do what i can as and when.

    Hips xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Yup, I cannot stand still for long so have mastered the art of doing various household chores sitting down which eases the strain on my knees, ankles and toes (all are affected by my PsA and OA). This was another reason for getting a seated rollator for when out and about - I can queue again which is handy at times. I'm still stuck in bed but hope to be a little more active tomorrow if my temperature drops. We'll see.

    I'm pleased you slept better, I am sure that it must make a difference to everything when one has a better night. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Sending you my very best wishes that you will soon be up and about again DD.

    It's amazing how we find different ways of doing things when we have to.
    Those people you see on tv who have no arms and do everything with their feet, are just incredible!

    The sleeplessness has been an ongoing problem for months now but im guessing it is all connected and just a matter of getting the pain management right.
    I try not to use the cocodamols during the daytime unless im in a lot of pain, but at night i take them regardless as i know my neck and shoulders will start playing up once i settle down.

    I'm sure i will get there in the end, or learn to manage on less sleep.


    Hips xx
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Just to add:

    I've noticed that recently i have become a lot more clumsy, mostly dropping things or taking 3 attempts to pick something up.
    It's becoming very frustrating, especially when i drop my ipad, kindle or phone whilst using them ....one minute they are in my hand, the next they are on the floor.

    My eldest daughter who has been staying over christmas and new year has picked up on it too.
    We laugh about it, but its just something else to add to my list of concerns.

    Hips xx
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    I think this is just part and parcel of arthritis. Not only are we not as strong as we think we are but bits of us are no longer in the right place. (Actually,hardly any bits of me are in the right place :lol: ) I gave up playing the piano when I found I was playing wrong notes because my fingers were no longer where I thought they were. Along with others on the forum, I also have 'dropsy days' for no obvious reason when I drop half the things I pick up. All part of arthritis' rich tapestry :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Frose
    Frose Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi Hips12,

    With regard to help trying to sleep, meditating is always a good one for me. If you can get a guided meditation on to a music player and stick headphones on, you'll be away in no time. It may take some practice, but meditation is about training your mind to switch off and helps with pain management as well.
    There is a brilliant book which is like my bible called 'mindfulness for health' by V Burch - comes with a CD with a few tracks on. It has really helped me in times of desperation :)

    Also I use some 'restful sleep' essential oil mix - couple of drops on my pillow at night, bliss. You can purchase it from this website: http://www.avena.co.uk/restful-sleep-concentrated-oil/

    Good luck
    Fi x
    Favourite quotes/mantras:
    Take one day at a time
    Don't compare yourself to others
    There is only now :)
  • Hips12
    Hips12 Member Posts: 62
    edited 30. Nov -1, 00:00
    Thank you again for all your help and advice.
    I hope no one is suffering too badly with the sudden drop in temperature.
    If anything i am suffering more from night sweats than feeling the cold, lately!

    Such a relief to know that being clumsy is all part of this, especially dropping things, which is becoming more frequent and extremely frustrating.

    The lack of sleep is becoming a huge issue with some nights not sleeping at all.
    It has made me very lethargic in the daytime and exceedingly sensitive to noise...which i am anyway due to my inner ear problem.

    I have tried taking 2 amitriptyline at 7pm, having a hot chocolate, having a glass of Baileys, turning everything off at 8pm, reading, listening to music, watching a film.
    So tonight i am going to try the Meditation download as recommended, thank you Frose.
    I will give it a go.
    The whole night not sleeping is becoming a big worry as i am not used to that and it takes days for me to start catching up again.

    I am also becoming a moaning minnie, I've realised, and need to stop feeling sorry for myself.
    We are all going through this in varying stages and i have taken a lot of advice and not given much back, so that is my first change of 2016 to stop whinging and help other people through THEIR tough times too, even if all i can offer is sympathy.

    Thank you again.

    Hips12 xx
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    We all feel sorry for ourselves at times, as well we might, and we all have a whinge here and there. It can clear the air and make us feel better. And please don't feel 'all i can offer is sympathy' . Believe me, that's the most valuable commodity we have on here. Just a kind word can do more good than all the advice in the world.

    I do hope the meditation helps. I doubt the hot chocolate or Bailey's would. Hot chocolate contains caffeine and is usually extremely high in sugar which is a stimulant. Cocoa, maybe with a sweetener rather than sugar, would be a better option. As for alcohol, it does aid sleep initially but makes us more likely to wake later in the night.

    If you drink coffee – or even tea - during the day caffeine can stay in the system for 4-6 hours. I'm a tea drinker but, after my evening meal, I only drink Redbush (Rooibos). It's caffeine-free and low in tannins.

    If you're still not sleeping and / or if you're worried about dropping things do go back to your GP for advice. Personally, I'd see no point in taking amitrip if I was then going to lie awake as before but don't just drop them without the doc's say so. I hope tonight is better.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    How's it been the last couple of nights?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright