Degenerative L5 problems - OA? Acceptance issues.

Mat48
Mat48 Member Posts: 1,075
edited 7. Feb 2013, 15:48 in Living with Arthritis archive
Hi - went to see GP for monthly bloods and spoke about trouble with coming to terms with RA and Metoject. I mean I don't think I'm a denial type but I do find that pumping a cytotoxic drug into my belly each week is becoming increasingly difficult to do. It's not about the injecting and was more of an issue when it was pills re nausea - but I find I'm chilled all the time since taking this drug and can barely function outside without huge amounts of clothing - spend too much time huddled in bed just to keep warm these days - always tired and very stiff after even five minutes sitting still.

She said she completely understood, would feel the same way etc. I told her I'd explained to the consultant about my lower back feeling sore and tight for about 2 months now - trouble with sitting down if I get up I can hardly walk for a few minutes. He dismissed it as not RA related. Wondered if this is OA as I think the rest might be too - in fact not sure about the RA at all.

She said if a patient presents at my age (fifty) with a bad back she doesn't blink it's so common but if a patient presents with slowly drifting fingers that can't fully clench and a raised ESR and CRP (now only raised not high as it was for ages) and a low positive RF then this would definitely flag up as unusual. She thinks I'm too young for OA.

So this is why I'm here really. I know from reading posts on here that many people much younger than me get OA. If it was aggressive could it also be the cause of raised inflammatory markers and if it's inflammatory OA could it not also be helped by MTX too? If my menopause started at 45 and was over by 48 then surely it's possible for wear and tear to start earlier too? And if it was all down to OA rather than RA then would my hands both be drifting as well and is the MTX actually necessary? My inflammatory markers started at around ESR 65 and CRP 40 and now my ESR is sitting comfortably at 26 and not moving and I think this is my normal level although the doctors say it should be lower still.

I saw the physio later about my sore back. My GP had told me it was sacroilliacs but she examined me and told me the problems are in my L5 and that's causing referred pain in my Sacroilliac joints. She said she could tell by the curve/ dip of my spine. I asked about what was causing this and she shrugged and said "it's just wear and tear - quite normal although a bit premature at fifty, but it will just come and go and exercise won't harm it as long as you don't do exercise when it's hurting. It's degenerative."

Does this mean it's OA and is it all just shrug worthy and totally unrelated to my RA? I feel rather put out by this really because when my hands and wrists were bad everyone was really helpful and the physio gave me lots of exercises and support but now my back and hips are sore she's just shrugging and I'm dismissed with a few stomach exercises and no follow up appointments? Surely if it's OA/ degenerative then physio should be a bit more ongoing and helpful? Sorry to moan but it's all making me feel ancient!
If you get lemons, make lemonade
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Comments

  • frogmella
    frogmella Member Posts: 1,111
    edited 30. Nov -0001, 00:00
    Hi!

    Well, first of all I am 36 (for a couple of weeks anyway!) and I have facet joint arthritis at l4l5. I suppose mine was caused by the degenerative disc I had at l5s1 and made worse by the fusion I had at that level, but it is not unusual for younger people to have OA in the spine.

    Secondly, there are lots of treatments available. To be fair most probably do start with self help (exercise) but that is not the be all and end all. It is true that exercise won't make it worse, if you do the right things. For instance don't run and don't swim breaststroke. Crawl is fine. My surgeon also says don't hoover or do too much blt (bending, lifting and twisting). Those stomach exercises will be strengthening your core and should help. Other treatments, like spinal injections are also available. A few of us on here have had them.

    I know how miserable the pain is. Do you also have nerve pain in your legs? If you do have you been offered gabapentin?

    I hope you find some relief soon. I find heat helps my back.

    Good luck
    Helen
  • PollySid
    PollySid Member Posts: 343
    edited 30. Nov -0001, 00:00
    My OA started in my mid 50's, so you are not too young. I have the reports saying I had it in my fingers, knees, toes and spine from 2008.
    I was only reading them yesterday so remember the dates.
    I think by what you have said you probably have got an inflammatory Arthur as your Dr has diagnosed (but I am not a Dr so that is only my opinion). There are a lot of people on here with OA and RA, so it is possible to have both.
    My blood levels have never shown any concern so I know mine is OA (plus disc problems).
    Can you get an appointment with the pain clinic? They seem to have a lot of information about treatments and drugs, so may be able to put your mind at rest.
    I, too have days where I panic over the amount of tablets I take, but soon realise when I try to cut them down why I am taking them as the pain returns.
    With OA all they do is prescribe painkillers, there is no other treatment available atm (not to my knowlege anyway).
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    Thank-you both very much for advice and the information (Helen). I had a bit of a read last night and in the early hours (insomnia). The moment of real clarity (epiphany even!) came from reading over my pain diary that I kept for over a year with photos of inflamed joints. I realised that I do have inflammatory arthritis, probably RA as they all tell me, because of the prevalent soft tissue inflammation and pain that wouldn't happen with OA.

    Then I read that the systemic inflammation indicated in inflammatory markers is the thing that makes inflammatory markers high and is the reason doctors are more preoccupied with modifying or helping people with the autoimmune arthritis because its not just about joints but has cardiovascular implications too. I've known all this for ages but properly understanding and digesting why some types of arthritis (those that arejust mechanical) seem to be more dismissed than others by health professionals hasn't really been absorbed or fully understood by me until yesterday.

    They can't actually do a lot for the OA type of arthritis from what you are both saying, apart from pain dullers and exercises and the odd injection or operations and joint replacements. This is why I think I found yesterday so depressing - because after 2 years of getting my head round RA - or trying to - and 2 years of denial really although I do take two DMARDs - I have finally realised that like many people on this forum I have landed two different types of inflammatory arthritis and the one I'm currently fearing far more - the OA - is actually more straight forward by far. I know i really must just accept it along with the RA finally.

    Sorry such a long self absorbed post but I think the presence of OA has somehow forced me come to terms with having RA finally - and all it might involve. At least there is treatment for the RA and at least it is working for me a large extent. I think I'm pretty lucky and will read up more about the degenerative spine stuff to check that I'm not making it worse. I'm hoping I won't need pain clinic or too much extra medication but can help myself by losing more weight and upping the tai chi type exercise too. Mat xxx
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    I think an auto-iimune arthritis and OA are different beasts and having a creaky foot in both camps has confirmed my view. I have OA as a result of the joint damage caused by the PsA and the meds I take for that do nothing for the OA but then why would they? I've always regarded OA as a 'dry' condition (that's why people take lubricants such as cod liver oil, glucosamine etc) whereas my PsA has always been a 'wet' condition, i.e. I produced far too much fluid to the extent it flooded the joint causing swelling etc. Having said that I know that anti-inflammatories are used to help OA but maybe that's to help swelling outside the joint capsule? I've never really been bothered enough to find out - it hurts is all I need to know and I don't care why. :)

    Of the two I prefer my OA because it is straightforward in its misery, it doesn't sneak up on me when I'm not looking or make me feel so wretchedly ill and tired that life isn't worth living. Yup, I've moved on since last Monday! :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    Oh dear DD. Yes I think I agree that I'd rather have some honest mechanical pain than stuff that sneaks up on you or causes havoc by stealth. The thing I'm never clear about is whether I actually have RA or some other form of arthritis. I've only just ruled out OA as being the reason my fingers are drifting and my wrists ache and the area around my joints is often very sore to the touch in the same way as my back is. I know I wouldn't have had high inflammatory markers or swollen tendons and soft tissue with OA now.

    If someone grabs me or squeezes bits of me (heaven forbid that anyone would want to actually :o) it is usually very painful and I think this is called Enthesitis and goes with the other inflammatory arthriitis's (Spondyloarthritis's?) whereas I rarely get visible swelling and redness around my joints as most people with RA do.

    It really doesn't bother me too much what type I have as long as I'm taking the right medication on most levels. I would rather have RA than PsA because I am really enjoying having clear skin for the first time in my life. But I don't like the thought of having my back problems dismissed as OA only to later find that it was actually uncontrolled PsA much. It's not that I want to take more DMARDs - I'm on two and that's quite enough for me. But I'm very literal and if I've been told to look out for changes which might change the diagnosis and treatment - and I do so and then everyone just shrugs and says "ach it's just a bit of post meno wear and tear woman - get used to it" I feel a bit short changed - even though it will all probably amount to the same thing in the end! Sorry if I'm being a bit wimpish but I'm not feeling very well today - sore throat, temperature and glands up. Tried to wriggle out of taking my Metoject 17.5 (new dose for me) tonight but GP said not in luck - my white blood cells were looking grand yesterday :?

    If anyone watches Borgen then the character I related to most this time was the teenage daughter, Laura and her chucking her happy pills down the toilet. I understood this entirely and when the shrink explained her rationale, not wanting to depend on a drug to be well and feeling she should be strong enough to cope without it I muttered "yes I can relate to that young Laura!" and my husband looked at me sideways and rolled his eyes :roll:
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    My hospital has always told me never to inject when I have a sore throat - damn what the whilte blood cells were doing yesterday, it's today that counts.

    I was classed as an inflammatory arthritic for years, the change of label didn't change anything else. The meds are the same whether it's RA, PsA, AS or just an IA. The more it develops less choice we have about what to take or how much of it - or we can choose to limit it and bear the brunt of an uncontrolled disease. It is entirely possible to have an auto-immune plus OA, it's unusual for it to happen the other way around but that doesn't mean it can't. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -0001, 00:00
    Its so hard this stage not knowing what your dealing with. Sounds like you have RA -dont let the lack of swelling or redness confuse you many people don't show typical signs like this including me! Let the rheumy sort that out. Then sounds like youre having a OA flare in your low back as said this is v common and happens in a wide range of ages depending on genetics and lifestyle, bad news its hard to treat but good news is it tends to stabilise over time and then flares up occasionally, so doing exercises and being careful during the active time will help. Pilates often helps so you may consider that.
    OA is for the most part a natural ageing process and as your vertebral discs thin so the biomechanics change which often causes pain, once your body adapts to the changes things settle movement reduces but generally so does pain
    - I am talking more about spinal degeneration here rather than widespread OA that is another case but I don't think its what you have.
    Hope that helped a bit and fingers crossed they sort your meds out.x
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    Oh I so don't feel like injecting tonight DD. It seems bonkers when the body is trying so hard to fight something - to then shove an immunosuppressant into it? I'm feeling like a complete wimp tonight but it's only a cold on the way I'm certain. She did at least say that she knows people on MTX are told to report sore throats but that's if the blood test hasn't coincided with these symptoms. Mine has. I have got one 15mg one left over still from the switch in doses do think I'll go for that instead as a compromise. Although it's my GPs that prescribe it I don't think they know that much about it as it's fairly uncommon here. I'm one of only two people in our practice area who inject Methotrexate and the other only has 15mg and is on an anti-tnf as well. So I'm a bit of a freak in our surgery but I think they feel reasonably confident about me not getting sick because I've had my Pneumovax and my flu jab and I very rarely get sick anyhow.

    Lots of aches and pains just now despite lower ESR - back is making things quite unpleasant but hands and wrists are aching too so maybe it's just the virus lowering my spirits and causing a minor flare. Thanks for all the info about OA. Strangely my fingers grew nodes on the top joints almost overnight straight after a Kenalog jab was given while I waited to see the rheumy 2 years ago in April. I was horrified by them - really gutted - especially as the steroid jab made me go into some terrible and uncharacteristic depression. So the RA came first but not by that long and top finger lumps were dismissed as wear and tear by rheumy and GP. It felt as if the steroid had stripped all my padding away and left me with raw, lumpy very sore hands for a while but was quite different and much more normal pain than RA.

    So the idea of OA isn't entirely new to me. I don't think either of my parents suffered from OA or RA although my mum did used to moan about her rheumatism sometimes when climbing stairs and have unaccounted for extreme pain and swelling in her feet a few times towards the end of her life. She died suddenly of heart failure brought on by undiagnosed angina/ cardiovasular problems. I sometimes wonder if she did have RA because I know this can cause cardiovascular problems if inflammation goes uncontrolled. My dad had gout and diabetes so we have been a pretty unhealthy lot really! Mat x
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Right, gout is an auto-immune condition ('im indoors has a blast of it every now and again) and I'm sure that rheumatism fits in somehwere on our spectrum. I know the feeling of not wanting to do it and after a few years of this nonsense I happily make my decisions about whether to meth (or humira) or not; I am, however, lucky in that I see my rheumatology nurse monthly to collect the meth so I can always tell her what I've taken and missed. It makes sense to me not to reduce the immune system whilst a bug is present but other people are told differently - just a way to prolong the extra misery in my view but hey, I'm not a doc (just a practising arthritic :wink: )

    It's not easy Mat, I've had both those jabs too but you can still catch a bug. I'm much more rigorous about hand washing, I always have anti-bac wipes in my bag for when I'm out and about (café tables etc are never clean) and over time I'm sure you will learn to stride with confidence along the narrow and very bouncy tightrope of meds and their administration. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    I feel like a stupid **** for even phoning GP up and asking her now DD. Sometimes I'm like a school kid who always looks for affirmation from the teacher. I really must grow up now :oops:

    But GPs are generalists and they don't know enough about these meds or RA. I really like this doctor (like both my GPs) but when I told her of my stupid hang ups about taking MTX forever and how I get a bit more stubborn and ridiculous about it as each week passes - she said that perhaps she should write to the rheumy and see if I could have some time off it just as the practice does for those on HRT to see if their meno symptoms have passed. I pointed out that it had taken 6 months for the MTX to work properly and this seemed like a high risk approach if I have my brain strictly in gear. She sort of woke up to the reality of what she was suggesting then I think and looked a bit embarassed. I don't know how or when I will just stop challenging this drug and the diagnosis in my mind and just accept that it's here to stay :roll: .

    If only I hadn't phoned her to ask then I could have just decided to have a week off - my first since I started it 14 months ago. But now I have sought her opinion I feel somehow obliged to follow it through. Daft ain't it?! I know someone whose baby son has a rare Luekemia and has just started taking Methotrexate which he will be on for 2 years until he's four. Now that really is a nightmare and I really have to snap out of this ridiculous psychological block about this drug. I hope you're right and this weekly inner battle ends soon DD and I can just get on with it as I should be doing by now. Mat x
    If you get lemons, make lemonade
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -0001, 00:00
    Oh mat u r really in the doldrums I also use the meth jab and hate it but in time acceptance comes and u realise that its the lesser evil without it we become painful wrecks who can't live life properly and that's what life's for so damn the ra and live.
    I always have a treat waiting for after my meth sort of takes my mind off it!
    Not sure if u have one but we have a clinical nurse helpline to call if were worried about anything, they r always my first port of call since as u say the gps just aren't specialised enough.
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    I don't have a specialist nurse Lizzie. I have no one I can speak to about RA apart from the GPs. I usually see them once a month when I have my blood taken these days because I feel it keeps me a bit grounded and I feel like an RA duckling a bit still - although I'm getting a bit less wee now of course but just not ready to be a proper duck yet.

    So yes I am in the doldrums but feel I've got no right to be. I know my ESR and liver and WBCs were all fine yesterday (my GP thinks it's raised but I maintain that an ESR of 26 is normal range for a woman of 50 and mine certainly has never gone lower since all this started) so it's unlikely that I'm flaring but I do feel pretty crap tonight. Shoulders, wrists and hands all ache and my ankles and heels are strangely tight and sore when I get up - and my back - well won't even go there :roll:

    Sorry to be a winge bag. I'll perhaps wake tomorrow like a new woman now I've done my weekly stabbing and once I've stuck a Buccastem under my lip and got a good night's sleep hopefully. It's half term up here so got a few days with boys lying in (although they should be revising really!) so that's one bonus at least. Mat x
    If you get lemons, make lemonade
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -0001, 00:00
    Up until the late 80s and early 90s ESR was calculated by taking your age and adding ten (only in women, men just use their age), then dividing by two. The formula is no longer used as later studies found it wasn't as rigid as that, but it is widely acknowledged that ESR goes up as we age. So, while doctors commonly use 15 as the normal cut off, it could be higher the older you are.

    I'd take it to mean that your RA treatment is controlling active inflammation as seen in your bloods.
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    Yes that's how I've been measuring it Scattered. I read this in a friend's copy of the BMJ last year and feel my normal range is around 26 probably - which is where I am now - and the lowest my inflammatory markers have managed to go since all this started a few years ago. My GP and the rheumy seem to think this means there is still some inflammation in me but that's only because they are using the standard guide of 0-10 as within normal range. I guess if my ESR continues to sit at 26 for a long while they will start to accept that this is my normal range. Tilda x
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    I've had measures of ESR and CRP in the 150s plus and felt 'OK', I've had them as low as couldn't be measured and felt rubbish. There is no norm, only what applies to you and that's where a diary comes in useful because you then build a picture of what is the 'norm' for you. Having said that I stopped my diary some time ago, probably because I became very familiar with what's what on the inflammatory front.

    Living where you do, Mat, means that some of the things we mainlanders take for granted won't apply and that in itself is an added pressure for you. I've learned to juggle over the years and to listen to my body and what it's telling me: **** theory and what the docs say because I have yet to meet an arthritic doc and theory is just that.

    You will find your way in time, and in so doing will learn to listen to yourself and what you think/feel/know you need. You're the one living with this and your arthritis is unique to you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    Thanks DD. I just feel like such a novice still even though I'm about 21 months in. I haven't learnt to trust my body's messages yet and always feel that pain must be a figment of my imagination. I have had ESR of 30 and CRP of 12 and barely been able to move about and then I've had a week when I'm travelling, feeling fit as a fiddle and yet been told my ESR is up in the 70s so i'm sure you must be right. I think a big part of me won't actually believe I have this thing until it reveals itself in visible form to me - which of course is everything I'm trying to avoid happening by taking the drugs.

    My fingers are apparently starting to drift (according to GP and hubby) on my right hand in particular. But its subtle and I can still just about tell myself that they were maybe always a bit wonky and I just never noticed. There's some kind of downright refusal to give this thing any house space at all but I think that this kind of denial/accept/ denial plays havoc with me emotionally - like a kind of inner battle ground. And I'm getting very battle weary but don't know how to stop it and learn to chill out a bit?

    Maybe the GP just isn't enough to get the RA acknowledged and just move on - but as I can't leave this place until kids are all grown up and gone and husband can't afford to quit his contracted job here we are stuck for the time being. And it has its bonuses of course - one being I love it - its home!

    I think I'd better get some sleep now but thanks for letting me ramble on. it does help speaking to people who know more than i do from experience. Hopefully the naproxen will do its job soon as I'm ridiculously sore tonight. X
    If you get lemons, make lemonade
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -0001, 00:00
    Hi mat how r u today?? If its any help my ESR and crp are always q low the max have been 24 & 36 and wow was I sore at that level still no major swelling though. At best I am at <8 and 0-2 so mine are low when controlled-at those levels I am v sprightly so know that's where I should be, just because urs haven't dropped doesn't mean they're ur normal it may be ur just not controlled yet- as you say u still have pain and that means there is inflam present, keep pestering the docs for help u can add in another dmard such as hydroxychloroquinine or sulphasalazine or both and this often helps, if there's no improvement after those u should then be considered for biologics under the NICE guidelines (guess ur applicable for those??) You may need to present the options direct to the gp if they are a bit inexperienced with ra. Also mtx can be increased to 25mg if necessary - not sure what you're on but see uve been on 15 which is still quite low u may find going up will change things.
    There is no need to have to suffer but u do need to keep pestering as if u don't they just think ur fine, everyone deserves to be comfortable and there are options.
    Regards the clinical nurse bit, if you have a rheumy they must have clin nurses in their clinics, ask about that facility there may be a helpline on mainland youre unaware of. Otherwise try ringing the rheum dept at whichever Hosp your rheum is in, just because you can't see them doesn't mean you can't speak to them you are in an atypical situation so they should accommodate that.

    Hope that helps x
  • frogmorton
    frogmorton Member Posts: 30,300
    edited 30. Nov -0001, 00:00
    Hi mat

    It's good to see you even though you look like you are struggling at the moment :(

    Acceptance doesn't happen overnight does it and I am convnced not in 'one go' either.

    I am also sorry to hear your back is playing you up too. If it's any consolation I was still in my 30's when I first had surgery on my back and had had issues with it for decades before that.

    You take care of yourself and keep posting.

    Love

    Toni xx
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    Well Toni I feel a bit stupid complaining about a sore back in the face of your problems but it is really hot (deep heat not to touch) and aching today. I haven't told my GP what the physio said about L5 degeneration yet but I will when I see him in a month for my next MTX blood tests.

    Sore throat still vaguely around and still feeling like I'm fighting something. Joints achy and stiff today all over but nothing specific - just a bit run down and fluey without the flu. I haven't had any full on pain since last June so I can't moan really.

    I am on Hydroxichloraquine too - currently 300mg per day - was on 400 but rheumy reduced it when I switched to injectable MTX. Just gone up to 17.5mg. It makes me sick and my liver sometimes plays up so GP has discouraged me from going up higher but I seem to be tolerating the 17.5 now so I guess if ESR continues to sit at 26 and my hands continue to be stiff and a bit swollen and slowly changing shape they rheumy might move me up to 20/25mg when I next see him in 5 months time. If my ESR went up again and my joints started flaring then my GP would just contact him by phone or email and ask him what to do next (steroids I suspect - although they make me go bipolar).

    There are only about 2 Biologic nurses down in Aberdeen I believe and they don't come up here or have contact with rheumy patients where I live as far as I know. I guess I could phone the ARI rheumatology dept myself and speak to one if I couldn't speak to my GP - but that's not what I've been told to do. There is a senior physio up here who stands in as a rheumy nurse and I can email her and she passes it on to my consultant. This seems to be how things work here and it's been okay to date but it does mean that I never see a specialist to confirm that things are normal or active and I don't have anyone I can really ask questions of. GP and physio just pass things on to my rheumy so I only do this if I am really struggling physically. For mental struggles/ battles this doesn't help much though! Mat x
    If you get lemons, make lemonade
  • frogmorton
    frogmorton Member Posts: 30,300
    edited 30. Nov -0001, 00:00
    Mat

    Don't be worrying about me - I am just fine :wink: Honestly. :oops:

    With my back which was degeneration (and a fracture apparently) heat did help. I wonder if that would help you? BUT if it's already hot I can't see how?

    Not good that you aren't due to 'see anyone' soon though.....5 months is a way away, but you are seeing a physio still?? and GP in a month?

    Let's hope someone else has some better ideas to ease your pain.

    Love

    Toni xxx
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    Well I do have a heated car seat and it's lovely! Sometimes I just go for a drive to get that heat coming up through the shaped leather these days!

    Physio was a bit dismissive "it will get better soon - just do the tummy exercises and work out gently and it will just flare up sometimes but not all the time" and no further appointments made by her. I try to see one of the GPs each month at blood test time because it helps me to believe I actually have this thing and aches and pains are not all a figment of my over active imagination. They are both great but I sometimes wonder if they think I'm a bit of a hypo for coming back month after month. I did explain what games my mind was playing re taking these dmards to the woman on Monday and she said she would be exactly the same in my situation.

    The man doctor (who diagnosed and referred me) is great too and more knowledgable about rheumatology - but more inclined to get shot of his patients dead on time (10 minutes) even if I still have questions and worries. So I try and see the nurse instead every few months so that lessens my annual GP visits a bit. I really hate the idea of them thinking of me as a bit of a needy person - but in truth where RA and now this back are concerned I feel like I am a bit in need of some hand holding. Guess half the people on here feel like that though but I think the absence of a rheumatology nurse is not great for someone like me who likes to ask questions about drugs and the disease itself.
    If you get lemons, make lemonade
  • frogmorton
    frogmorton Member Posts: 30,300
    edited 30. Nov -0001, 00:00
    Hi Mat

    Well that's much as they told me for years and years. In my case it seemed to be tru as I had long periods when it would be 'fine' more or less.

    Stomach exercise ARE a good idea, (they give you 'core' strength), but she may also be able to give you soem exercises to relieve the pain too.

    Mat - I am just like you as are many of us on here. Feeling that we are 'wasting the doctor's time' and embarrassed to go.

    Take care now

    Love

    Toni xx
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    Thanks for the support. Do any of you have massages when your backs are sore? I've never tried as a bit squeamish about being touched but I've been recommended a local masseur and thought it might help?

    All this ache is turning me into a grumpy woman today so my son (off for half term) tells me. OH says the generalised ache isn't arther at all its just the same cold virus he's had which apparently makes bones ache. I prefer blaming arthritis its more satisfying! X
    If you get lemons, make lemonade
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -0001, 00:00
    Hi Mat,

    I'm sorry things are tough at the mo. I have had a massage, from a trained masseur who understood my condition but I'm afraid afterwards I felt really sick and dizzy. It could just have been me of course but there you go, that was my experience of it, never to be repeated! Your masseur might be a totally different kettle of fish though.

    I hope things settle for you, it's so confusing when you get bombarded with information and ideas from the medics, sometimes it just seems to make things harder to fathom and work out. As for acceptance, I think Toni got that just right, it is something that comes in small stages, baby steps for me. There are still times when I think 'but it's not fair' but generally, I have now accepted things, I try to do it by seeing what I gained rather than what I lost - empathy, an ability not to be stuck in the rat race and to see life for how much it is worth when things are good. It took me a while but one day I did find myself singing whilst doing the dishes and thought 'well there you go, not so bad this life after all'.

    Hope things settle soon. My favourite therapy when things are bad is a bathroom with a nice hot bath, some candles, a face mask and either the radio or music for company. Mr LV knows not to enter or even think of disturbing me at such times unless there is a natural disaster or the house is on fire/ falling down. It's a little thing but it's a bit of time and space away from everything where my brain can stop thinking and worrying.

    LVxx
    Hey little fighter, things will get brighter
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -0001, 00:00
    Yes I love hot baths too. Unfortunately we are all sharing one toilet in there currently and wretched plumber keeps ordering the wrong parts to fix the second toilet so no sooner do I lock the door when someone knocks and says "mum I'm bursting!". Mostly I'm a positive person but having OA in back as well as RA and meds seems to have pushed me into a gloom. I am sure I'll be upbeat again soon because I do realise many have it far worse. But everything I do just now seems coloured by MTX hangover, lurking nausea from the Hydroxy and backache! Roll on spring. Mat x
    If you get lemons, make lemonade