Nice to meet you all :)

JPH
JPH Member Posts: 45
edited 31. Jul 2015, 03:08 in Say Hello Archive
Hi all :)

My name is Jules, (mid to late 40's)
I have been here once before some time ago. Back then I think I posted about having shoulder impingement and arthritis, you were all great :)

I did speak with my doc back then who said for me to contact OT myself via their net page. Believe it or not, I posted then a message November last
year, by the time they contacted me back in March this I actually had no idea why they were calling. It had been so long waiting, id forgotten lol. Anyway, that app I postponed as I was feeling rough (fatigue), I thought I was just feeling run down, I had no idea what so ever I had fatigue.
Then i made an appointment, she cancelled, her father was taken I'll and later passed away, a while later she returned to work, rang me to reschedule then cancelled on me again as she'd booked me into see her during her booked holidays.. by the time she returned i was mid moving house, so I have yet to see her.

My doc is "finally" making an appointment for me to see the rheumatology team/person.

Back in 1998 my fingers (3 on each finger, ) were diagnosed as arthritis, was never told what type though, but it was just fingers, not thumbs..
My arthritis back then lasted about a year or so, I
don't really remember, that may have just been how long I felt id had it.. I remember not being able to cut my own food.

Reading so many threads here I consider myself extremely lucky as into the turn of the century apart from the occasional flare up in my fingers, it was never really bad.

Well.... it seems id been blessed with minor issues in my hands for long enough so it crept up and dang did it come back with a vengeance !! :(


January 2011 I damaged my left shoulder, tore the fluid sac between the ball and socket until the bones were grinding against themselves (won't go into detail about the impingement just that --->>>) by the time I went in for surgery I was in agony and taking 100mg oxycontin, 2mg diazapam when needed, 10ml oramorph every 3-4 hours, diclofenac, move at cream, brufen cream, bridegroom gel, bio freeze spray and gel (omg that disgusting green gunk is like something id expect to be zapped in Ghostbusters!!)
During 4 hurt surgery arthritis in my left shoulder waas found, but as the surgeon went in to fix my shoulder impingement, not the arthritis, the details, name etc didn't really go into depth..
While having rays on both shoulders (for comparison) arthritis was spotted in both shoulders, but again as the rays were for a different issue, no-one would expand even a little on the arthritis for me.

So now, I have it confirmed its all 8 fingers and both shoulders

oh and an "Its probably very likely" for arthritis in both thumbs.

When i asked my doc about the pains in the back of my neck I was pushing to get some form, any form of diagnosis out of anyone...
I said to my doc ...... " I need to know if the pain in the base of my neck is due from it coming up from shoulder surgery i'm still waiting to get fixed, or is itnpossiblenit could either be cervical arthritis or AS "

He replied " Its not from the damaged shoulders, there is a good chance though that it is both of the typesmof arthritis at the same time that you mention, you should ask rheumatoligy that when you see them"

From me, its, pain-wise, hardly there most flare ups in my feet, both knees are getting progressively worse making it harder to walk during flare ups, haven't felt it in my hips,
I know I have tennis elbow in both arms, hands, shoulders and neck i've already covered.

This last month i've had the worst flare up ever, as I said, I have been extremely lucky in must getting mild pains in hand flare ups which i,'ve generally just gotten brufen from the chemist and used voltarol as a rub in rather that seeing the doc for movelat, but wow am I suffering now. Every major joint is agony, and when the brufen does calm those a little, some of the smaller joints start hurting.

Few nights ago my husband was helping me put on my cardy and I literally had tears streaming down my face, I was screaming "put my arm down" !!!!
It was excruciating to say the least!!!

As I said earlier, I have been reading the forums here for a while now, so pain-wise, i'm pretty sure many of you have experienced something similar.
This flare up I did get first hand experience of having fatigue though, how it affects me mentally, physically and emotionally, I think it took my husband by surprise too when he realized I wasn't pretending to be tired just to get out of doing something.

Oh wow, sorry for those reading, i've just scrolled up and seen how much i've typed - i'll so suffer for that one when the diclofenac wears off :)

So, that's me, my aches, pains and killer pains.. thanks for reading, if you made it all the way to the end ---- just glad no one has arthritis of the eye balls triggered from excessive reading ;)

Nice too meet you all :)
"You know you have RA when half brushed hair is awesome"

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello, it's nice to 'meet' you again, you have been having a time of it, haven't you? Ah yes, dressing with arthritis - it ain't fun. It's surprising what you learn to do without and how you adjust. Cardigans are not in my wardrobe now, ponchos are, long skirts and Tshirts are the uniform of the day - knickers optional. :wink:

    I think the sooner you see rheumatology the better - they may not have an answer but they may be able to rule some things out. From your descriptions it sounds to me as though osteoarthritis is the culprit but that doesn't mean that something on the auto-immune front is also grumbling away, the kind of draining fatigue you mention hints at that. It's not unknown to do the arthritis double, many on here have, me included. I began with an auto-immune (psoriatic, PsA) and the joint damage caused by that has led to OA in some very useful joints. If you turn out to be doing it the other way round then welcome to a rather exclusive club.

    Whatever we do for pain the relief is only temporary and usually just dulls the sharper edges. I prefer to keep my pain relief to the minimum so I can accurately judge the feedback from the joints, this tells me when to stop doing something and have a rest. I broke my upper left humerus in three places in January 2014, by tripping over the side strut of my rollator. That was a miserable time, I took twice as long to heal than usual, probably thanks to the immune-suppressing meds for my PsA and it's still sore, especially in damp weather. OA is moving in there too so I can empathise with hurty shoulders. I think they are the worst joints to be affected, it's impossible to get comfortable whether sitting or lying.

    Appointments for rheumatology can take anywhere between two to six months to come through. You may be able to speed this by (if appropriate) stating you could take a cancellation; I lived within a five minute drive of my hospital, now it's fifteen minutes but I always say I can do this. Mind you I am fortunate to be able to drive and retired so I have plenty of free time. As for the OT, crikey, that's a saga and a half. Keep chasing that one, please. The one thing I have learned over my nineteen arthritic years is that we have to do a fair bit of our admin. - don't rely on hard-pressed nurses and docs. etc. to remember us, we are one of many.

    Keep us informed and I hope some answers can soon be found. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Hi Jules and welcome back.

    I think it's good that you'll be seeing a rheumatologist as that way you can find out for sure if you have an inflammatory form of arthritis or not. As DD has said, many of us have both and, although we'd prefer not be so greedy :wink: , such is life. DD seems to have covered most things so I'll just wish you well and hope that the appointment comes through sooner rather than later.

    By the way, people never hold jackets etc correctly for those of us with shoulder problems. Next time ensure it's held downwards rather than up where 'normal' people put them on.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
    Hey both :) Thanks for the replies.

    I'm sorry for such a really long first post. There are two reasons for that.
    1. I do get incredibly nervous around people I don't know, i get anxious and start to ramble on and on.. hence the long post. its just something that happens even if i don't mean it too.
    2.i thought if i got it all out in one go, the problems i'm having wouldn't seem so confusing.

    My posts do get shorter the more i relax and chat though, honestly :)
    With the meds, I do get where you are coming from on having the meds at just a point so they do relieve the pain, but just enough for us to gauge the pain, that i don't need the meds to completely kill it, otherwise i won't know if the pain level is dropping.

    OT phoned me back yesterday, i have an appointment with her on August 11th.
    I have an appointment with my doc this evening at 5.10pm. I can then hopefully find out the name of the rheumatologist he wrote too for me so i can phone them myself and keep a check on where i am on their waiting list.

    A while ago (about 8 mths i think) i was getting so depressed with pain,the doc prescribed citalopram, 20mg. Its a mild anti depressant.He later did blood tests for anaemia.
    The results only showed i was lacking in something (i don't recall what, but wasn't anything i recognised) he thought was caused by the citalopram so reduced those to 10mg.
    He said he was checking for how low the iron was in my blood (for anaemia) do you know if that test showing nothing wrong with my iron level on that test would apply to arthrits tests too ?
    The tests he had done though hadn't shown anything wrong with the iron level.
    "You know you have RA when half brushed hair is awesome"
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
    Oh and bit of good news - I brought myself a shopping trolley yesterday :D (finally conceded that even 2lb was too much pain now)

    well, funny now i look back at it, though wasn't funny at the time...

    Have you seen the ad for new mums (i think its a baby formula ad), the mum, with new baby, gets so frustrated trying to get the break working on the baby stroller she just pushes it to the edge of the curb and walks away. (know i know how she felt!)
    well, i struggled with this darn trolley, i had it laid down, on its side, upside down, took the bag off .. but couldn't for the life of me figure out how to put the darn stand down. i thought that when i was walking with it the stand went up, and i put it down when i stopped, like putting the breaks on.
    in the end i took it into the mobility shop and asked in there how to work it.. hahahahaha i'd been in the middle of town cursing at this darn thing only to find out it actually stays down, i only raise it when i'm done and storing it !! wow didn't i feel the fool, but i imagine to passers by i must have looked quite odd or amusing fighting with this trolley.

    Talk about trolley rage !!
    i persevered and won, with some help of course :D
    "You know you have RA when half brushed hair is awesome"
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    I bought a shopping trolley years ago and consigned it to the dump when we moved as I hadn't used it for years (apart for storing spare handbags). I discovered the joys of internet supermarket shopping in January 2014 when I broke my upper left humerus and now happily let others who can do the heavy stuff!

    Anaemia is common on here and not necessarily related to arthritis. It's easy to blame everything that happens on arthritis but it isn't necessarily the cause. I'm on citalopram and have been anaemic in the past but my GP didn't blame that. I now make an effort to take iron on board as naturally as possible and I take a daily Vit.D supplement on the recommendation of my rheumatologist. My bloods are checked every two months and so far so good on both fronts. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    JPH wrote:
    I do get where you are coming from on having the meds at just a point so they do relieve the pain, but just enough for us to gauge the pain, that i don't need the meds to completely kill it, otherwise i won't know if the pain level is dropping.

    You won't actually get meds to 'completely kill it'. They don't exist :lol:

    Good for you for getting the OT appointment. I hope it goes well. And for getting the trolley (and conquering it). It might have seemed like giving in but surely anything that enables us to cope better is worth a shout? Loads of unarthritic people use shopping trolleys anyway.

    Blood tests only actually test for whatever is ordered. One sample can be used for several tests but only for those tests that the doc has ordered. If he asked for your iron levels to be tested that's all the lab would test for. Nothing to do with arthritis.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
    :hammock:
    dreamdaisy wrote:
    I bought a shopping trolley years ago and consigned it to the dump when we moved as I hadn't used it for years (apart for storing spare handbags). I discovered the joys of internet supermarket shopping in January 2014 when I broke my upper left humerus and now happily let others who can do the heavy stuff!

    Anaemia is common on here and not necessarily related to arthritis. It's easy to blame everything that happens on arthritis but it isn't necessarily the cause. I'm on citalopram and have been anaemic in the past but my GP didn't blame that. I now make an effort to take iron on board as naturally as possible and I take a daily Vit.D supplement on the recommendation of my rheumatologist. My bloods are checked every two months and so far so good on both fronts. DD



    Sorry, I must've explained myself poorly there.
    Due to all the pain i've been in the last five years, whether its from the shoulder impingement or the arthritis. ... at the end of the day pain is pain, it didn't matter to me whether it was arthritis or shoulder impingement thy was causing it id must really had enough, felt I couldn't go on and was really at the end of my tether

    The doc gave me citalopram to help with my depression. I recently started having really bad dizzy spells.. it lasted a few weeks before I told anyone. But my doc has always been worried about me having dizzy spells as i have extremely low BP even during times of utmost stress- he told me he wanted me to tell him anytime I went through a dizzy bout.
    I dom't know what he found in the blood test results but did say my iron levels showed as being ok.

    What I was so poorly trying to ask was, just because my iron showed ok in those tests, does it naturally mean my iron levels will show as ok no matter what other. tests he runs or tests me for ?
    "You know you have RA when half brushed hair is awesome"
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Thinking about it logically, f your iron levels are OK then your iron levels are OK, they should register the same no matter what the test. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
    That's what I thought, but wanted 2nd opinion as I've been thrown a
    curve ball by logic before.

    I am a logical person by lately when I've looked at all possible outcomes
    and at whats illogical, I get told things like "you can't always rely/go by logic
    in situations or cases like this". .... while I've only been told that a couple of times, I know don't take anything health related for granted or go by logic.

    I guess I just wanted to make sure i wasn't wrong on this :)

    Your advise is appreciated a lot, thank you :)
    "You know you have RA when half brushed hair is awesome"
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    Logic and health don't make good bedfellows unfortunately! As DD says, your iron levels are what they are on the test results, and any form of repeat will likely give the same result, unless there's an ongoing problem. However, 'within normal range' is just that - a range, so if you're usually at the top of the range and fall to the bottom end that can be something that needs looking at even though the result will show as 'normal'. I found this out the hard way after my son was born, fortunately the midwife was clued up and explained to the GP.
  • JPH
    JPH Member Posts: 45
    edited 30. Nov -1, 00:00
    After seeing my doc yesterday late afternoon and talking through every thing with him, I did say that due to losing my much loved job just before christmas, finances ( serious lack of) , moving, the guilt of watching my husband pack and box everything and being limited to help, the actual move, more finance worries, over hearing my husband muttering to himself
    "i've got to do everything in this damn house" and guilt really kicking in then (for me, guilt is my worst foe, the only emotion I cannot handle) - i've told my doc that this last big flare up must have been triggered by a long build up of stress..

    Yet 5 years ago I lost my mam, my husband lost his father then we moved house all within 2. months yet the only stress reaction then was shingles.
    Though for me, looking at events now and then, it doesn't make much sense I flare now and not then, i'm still putting this one down to stress. (for now)

    For me now, only time will tell if a large part of the joint pain calms down over the next week or so, or if i'm going to be left with a little more pain than pre-flare.

    I don't think, by his expression that the doc fully believed me or agreed with
    me when i said id just put this trigger down to a build up, as i said ...

    I guess, for now at the very at least, I try to keep. mobile, I don't overdo it and take breaks/rest times as often as i feel I need too.
    Not sure what else I can say or do on this one... while i'be had a lot of mild flare ups
    since 1998 in my hands, this last week has been the biggest since then..

    I was pretty knowledgeable on my condition way back then, but now I just feel somewhat lost and confused by it all :( Its a lot to take in, comprehend

    Am just going to try and do what I can until August 11th when i have an appointment with O.T

    I really do appreciate you all in the time to post on here and with the help and advice you've given me :)
    "
    "You know you have RA when half brushed hair is awesome"
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    I was pretty knowledgeable on my condition way back then, but now I just feel somewhat lost and confused by it all :( Its a lot to take in, comprehend
    It is a lot to take in especially if you can't find rhyme or reason. However your body has had a lot happen to it in the intervening years, so comparison between then and now will be of limited use( and probably mostly negative), especially once you factor in the 'it does because it can' aspect to arthritis that DD often mentions. It might be better to concentrate on the here and now and deal with things as they arise, as you mention at the end of your post.You might also want to post on the Living with Arthritis board which has a bigger audience to offer encouragement and sympathy, and see if you can find some of the quirky humour in Chit Chat.
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Arthritis is a complicated life companion, especially the auto-immune versions. Logic, rhyme and reason have no role to play, sometimes we expect extra stresses to cause some kind of payback and nothing happens, other times we do nothing and end up in misery for a few days. Increased pain levels do not, to my way of thinking, constitute a flare: that is one 'f' word which is both mis and over-used on here. Increased pain in some OA-affected joints reflects too much physical effort on my part, my PsA however, can and does flare, despite the medications. My PsA-affected joints become more tender, hot to the touch and I feel sick with tiredness for weeks until things calm down.

    I empathise with the challenges of life, we had a time of it between October 2012 and December 2013; we lost our mums within six months of each other, sold their houses, bought one, sold ours and moved but arthritis-wise everything was much as usual. We shared the packing and unpacking but my husband did the lion's share which was fair enough. You just cannot tell what will happen when, which is probably just as well! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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