Hi all

Jenmoss1
Jenmoss1 Member Posts: 9
edited 27. Jun 2018, 10:17 in Say Hello Archive
Hi everyone I’m new here but not new to arthritis
my name is Jenny, I’m 44 years old, married forever to my wonderful husband Phil and have 3 sons aged, 28, 23 and 16
It all started when I was 27 years old, I had cauda equina syndrome and had an emergency back op, 10 years later after suffering a lot of pain and stiffness in my lower spine I had an mri and found severe arthritis, they said its more than likely due to my back op, not long after I started suffering pain and cramp in the middle of my spine I couldn’t take a deep breath or cough as my ribs wouldn’t expand after another mri they found arthritis.
For many years I had pain in my right shoulder my arm would also go numb and tingle etc after ruling out all the other things it could be I had an X-ray, it showed severe arthritis in both joints in my right shoulder and in my left side collarbone, so you would think surely that’s it .... no...it’s in my neck to, the paramedics thought I was having a mini stroke and after an mri of my head and neck they found severe arthritis in my lower neck, wonderful 🤔, I was told my bones are what you see in a 90 year old,
Basically I’m riddled with it, I have noticed these past few months I’m so lethargic and I ache all over like you have flu symptoms, has anybody else had this x

Comments

  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi Jenmoss and welcome to the Arthritis forums.

    So sorry to hear of your large array of symptoms - that's quite a catalogue and its no wonder that you also experience lethargy and ache all over!

    Are you prescribed any sort of pain relief or other medication? If you have started some new course of medicine, this may have an effect on how tired you are feeling, especially if there are reactions with other prescribed drugs.

    If you need to talk confidentially, please don't hesitate to get in touch with our free Helplines on 0808 800 4050 - details can be found here: https://www.arthritiscare.org.uk/our-services-and-support/helpline

    In addition, the web site has a good section on Living with Arthritis. It even starts off with the helpful line of "We know that arthritis can be a painful condition and that symptoms like fatigue can seriously affect what you feel able to do on a daily basis." :D

    The section on Living With Arthritis begins here: https://www.arthritiscare.org.uk/living-with-arthritis

    I look forward to reading your posts here on the forums.

    All best wishes
    Brynmor
  • Jenmoss1
    Jenmoss1 Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi Brynmor
    The medication I’m on is
    amitriptyline 40mg,
    oral morphine, I can take up to 4x 5ml a day
    Ibuprofen 4 x a day 400mg
    Sumatriptan as I suffer a lot of migraine/headaches because of my neck
    Duloxetine 40mg 2x a day for restless legs,
    Laxido 5 sachets a day
    And last but not least co codamol 30mg/500mg
    All the medication above I’ve been taking for 2 to 10 years
    I’m not sleepy tired where you have to fight with your eyelids, it’s more physically exhausted like I’ve been in the gym for a few hours and then go on a 10 mile hike, and I feel like I have the flu but I’m not ill this has been going on for a few months, and last night I was getting stabbing pains on the outsides of my hands , I new I would get worse but it’s not been gradual it’s just hit me
    🤓 x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I am in a rush so can't stay long: I read your post and wondered if you have ever had your blood tested for an auto-immune arthritis? I am one of the lucky ones with a creaky foot in both camps, I started with psoriatic arthritis in 1997 and the joint damage that caused led to osteo, diagnosed in 2011. I'll be back later. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Jenmoss1
    Jenmoss1 Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi dreamdaisy I do remember 4 years or so back when they thought I was having a mini stroke they did blood tests and said I have an infection in my bones and something about rheumatoid arthritis but they don’t know where in my body and something about having more cells than the othe, i had to take some tablets and get re tested after the two weeks and they said it’s a lot better, do you think it maybe that?
    sadly I don’t get told much from my doctors, for instance I didn’t know it was called cauda equina syndrome until 2012 that’s 11 years after having it, I just thought it was L4 and L5 double discectomy
    Sorry to here about your suffering to and I’m looking up what psoriatic arthritis is as I’ve not heard of it before x
  • Jenmoss1
    Jenmoss1 Member Posts: 9
    edited 30. Nov -1, 00:00
    Ok... I’m a bit confused I got my scan, mri and X-ray results out to go over again and in one X-ray for my right shoulder it says......
    There is apparent reduction in the subacromial space with associated sclerosis and cortical surface irregularity at the greater tuberosity which maybe due to underlying subacromial impingement.... I did look it up and it mentioned multiple sclerosis, can anyone make out what it means please x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I'm a mere patient and do not speak medic in its purest form. I have never wanted to be copied in to test results etc. for the reason I won't have a clue what they mean (and also very little interest in the whys and wherefores). I know what I have, I know why I have it and I am taking the meds to control one and soften the impact of the other, that's enough for me. :)

    Psoriatic arthritis (PsA) is one of the three hundred or so auto-immune inflammatory conditions (including MS) that exist. I was born with eczema and developed asthma aged seven so this rolling up was no great surprise. It differs from RA in how it affects the joints, preferring to cause inflammation in the enthesis (the bits where the muscles, tendons and ligaments join onto bones). I confused the medics for some time as I had it without much at all of the corresponding skin trouble, plus it didn't begin in the traditional places but the meds used to treat it and all the others are the same. OA inflammation is localised whereas auto-immune inflammation affects the whole body. To further muddy the waters auto-immune arthritis can be either sero-positive (i.e. rheumatoid factor is present in the bloods) or sero-negative (it isn't). PsA is one of the latter, thanks to my over-active immune system my body likes to attack itself in any way it can find.

    Is there a family history of auto-immune troubles from either side? There doesn't have to be (the dross can start just because it feels like it) but there is often a link. My Ma's side provided the eczema and asthma, Pa's the psoriasis. Ma and Pa were healthy which was nice for them. :lol:

    The reason I asked about tests was because the term arthritis is not a particularly informative one. The laity think there are two kinds, RA and OA. It is nowhere near as simple. OA can make one tired but not in the same, overwhelming way as an uncontrolled auto-immune: having both I know. My PsA flares, rending me useless for weeks at a time. My OA worsens either due to the weather or my stupidly overdoing things, after a rest or a change in the weather it reverts to its usual level. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,240
    edited 30. Nov -1, 00:00
    Hello from me too :D

    Medic is another language and one which, like DD, I don't speak. If I got something like that I'd be making an appointment to ask my GP to translate.

    Docs often have a policy of answering any questions asked but presuming that, if people don't ask questions, it's because they don't want to know. Many don't.

    It's perfectly normal and, unfortunately, usual for arthritis to move all over once it has a toe hold and, given that it all started after the back operation, I guess that makes a kind of sense because it can set in after trauma to a joint. However, it would be worth asking to see a rheumatologist just to make sure that this is what it is and that an autoimmune form of arthritis isn't present. GPs sometimes do a simple blood test and, because they're not specialists, think a negative result means there is no RA. It might but there are other, sero-negative forms.

    Autoimmune forms of arthritis, when flaring, can cause crushing fatigue but I think if I were on all the pain meds you are, I'd struggle to wake up at all even when not flaring. I know you feel they are not responsible for your fatigue but they must surely be contributing.

    I think, in your shoes, I'd go to the doc, ask for an interpretation of your results and ask to see a rheumatologist. It's unlikely that a rheumatologist would get it wrong. Do be prepared for a wait though.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Jenmoss1
    Jenmoss1 Member Posts: 9
    edited 30. Nov -1, 00:00
    Thanks for the information 😊, I’ve booked a double appointment to see my doctor and ask him to look at my results again, I’ve changed doctors as I moved and they would of received my medical records by now
    I know what you mean about my meds 😆 , over the years I’ve learned to use morphine and co codamol if and when I need them as I don’t want to be addicted to them, the past few days I’ve not been able to get to sleep, you would think I wouldn’t have a problem with all them meds, I just get back up after an hour of getting nowhere then give it another hour or two say around midnight ish and then straight up the wooden hills to the land of nod again 👍🏻
  • stickywicket
    stickywicket Member Posts: 26,240
    edited 30. Nov -1, 00:00
    I suggest you make a list of all questions you'd like to ask and take them with you, preferably with someone to act as a second pair of ears as, in our anxiety to ask the right questions, we can sometimes forget to listen to the answers.

    A change of GP, and a fresh pair of eyes, can often be beneficial. Do let us know how you get on.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Jenmoss1
    Jenmoss1 Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi everyone I’ve had all my blood tests back and they are all normal, ....what I have found out what I do have is Fibromyalgia...
    Absolutely wonderful 😔😢 so having cauda equina syndrome, severe osteoarthritis isn’t good enough why not give me another diagnosis... so now I’ve joined 3 forums and have a lot of reading to do xxx
  • stickywicket
    stickywicket Member Posts: 26,240
    edited 30. Nov -1, 00:00
    I'm sorry you have fibro. That must have come as a disappointment. Quite a few people on here have it, usually alongside some other form of arthritis. If you have questions about it it's best to put them on the Living With Arthritis forum as more people look on there. I can't help, I'm afraid. I gave that one a miss :wink:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Oh dear, I am sorry, these things can (and indeed do) cluster. I remember being very indignant when my OA was diagnosed, I naively thought one could only have one kind of arthritis despite already having multiple conditions: what a twerp. :roll:

    I too have fibro but haven't bothered about finding a forum, I read enough about other people's pain and misery on here. I was very surprised when my rheumatologist diagnosed it, I mentioned at one appointment just how under the weather I was feeling, she asked a few questions then said 'Aha!' One of us felt a sense of achievement. :wink: It doesn't bother me too much unless I get very tired, the PsA is active or I have a bug.

    I hope you find the support you need, it can be difficult to cheer people on when one isn't feeling too good oneself. Please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben