Hi everyone, what a great site!

Gsxrick
Gsxrick Member Posts: 10
edited 27. Jan 2014, 12:51 in Say Hello Archive
Hi all, :D
Well I just found this site and have to say its great to not feel like I'm the only one.
Looks like there is a lot of helpful support and advice around.
Well I shall bore you now with my long winded story.

Iam 28 year old male, live in lovely small town in mid wales right by the coast (I'm not welsh) moved here two years ago now.
I have been married 4 years to my gorgeous wife and we have been together 9 years now.
Have always worked full time as a vehicle mechanic/ technician since leaving school up until 6months ago....
A few years ago now I started to get sharp stabbing pain in my butt cheek normally my left one lol funny but not funny it was bloody painful! But it would come and go as it pleased with a few month gap in between it happening.
Then at the start of 2013 I started having back pain, still working and plodding on, it's progressively got worse along with the stabbing butt pain.
I went to my gp's and he eventually did an x ray and checked for any damage as I have crashed a motorbike or two...
No damage and nothing found went away carried on with life, but by June i found myself in a lot of pain the stabbing pain was more frequent the back pain was there all the time and started to get really bad chest pains, after a visit to hospital I got referred to a rhumi my appointment is on February 13th!
The nice doctor said it sounded like something inflammatory related.
I have since had loads of blood tests from my gp all okay apart from one test showed inflammation markers were slightly raised, been tested for hlab27 which came back negative. I have been put on naproxen and zapain pain killers but after taking the naproxen for a month made no real difference and effected my guts bad. I try not to take pain killers only when I really can't deal with the pain anymore.
My current symptoms are listed below but vary day to day
sharp stabbing pain in either but cheek but only one at a time
Tingling/numbness down the leg that the butt pain is in
Waking up with both hands numb
Pain in lower back/ pelvis often
Pain in shoulders occasional
Pain in hands and wrists often
Pain in ankles occasional
Pain in ribs now occasional since stopped working
Constant clicking and cracking from All over my body I sound Brocken my wife says lol
Often iam very warm, walked the dog in my t shirt tonight as I had tidied the living room just before and was boiling

The thing that's hit me hardest? Having to leave my job and because I'm young and look fit the way everyone including gp's thinks there is nothing wrong with me, I have had a stand up arguement with one of the gp's because of this, I have always worked never claimed benfits and never been to doctors other than for asthma as a child and when I do go it takes god knows how many times of explaining it's not in my head and that iam in agony!
I am now receiving esa contribution based and as yet haven't claimed pip as I didn't see myself as disabled and don't like the thought of taking what someone with more needs than me deserves but over the past few months I have started to get worse and do need help from my wife so looks like I will have to go down that route even though I want nothing more than to work, all my qualifications are good for nothing as I can no longer do a manual job.
For the future? I'm looking at the rheumatologist as the light at the end of the tunnel which I know I shouldn't do as they can't wave magic wands but in a way it would be nice to get some confirmation that iam not crazy.
I have enrolled on a CErT physics course with the open uni and I'm going to work towards a astro physics degree as it's something that's always interested me.
In all honesty I haven't accepted it and I fight it, I still try and ride my motorbike and end up in bed for the following three days but like I have tryed to explain to my family and friends it ain't easy going from a fit and healthy active mid twentys to a can't do anything I used to do nearly 30 lol.
Also my mum was diagnosed with psoriatic arthiritus it affects her shoulders and neck mostly but she helps and understand what the pain can be like.
If anyone has any advice or guidance please feel free it would be good to know if people think my symptoms match anything in particular at the end of the day in my eyes you guys know best.

Anyways sorry for waffling on for ages, and apologies for my terrible grammar I'm on the iPad with predictive txt oh and it's 5am and I haven't been sleep.

Good luck to you all and reading your story's and advice really does help, you are all so brave and strong and I wish one day I can be like that Aswell.
Rich

Comments

  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    Hi there, Rich. It's good to meet you though, as we say round here, sorry you had to find us. Well, I've read and re-read your post and I'd like to start by taking issue with your last sentence. It seems to me that, if you do have some form of arthritis, you already have all the strength and bravery you'll need to cope with it. It seems as if you've soldiered on as best you could for as long as you could. As for deciding to do an OU Physics degree because all your current qualifications are for manual stuff – wow, what a positive attitude!

    I have to say I can't relate much to most of your symptoms. I have RA. The 'pain in the butt' stuff (It is, isn't it :lol: ) sounds like what I got in the way of hip pain before I got new hips but I don't have much trouble with my back or with numbness or tingling.

    You say your Mum has PsA. This is one of the sero-negative forms of auto-immune arthritis ie people with it tend to test negative for the rheumatoid factor. There are other sero-neg forms of arthritis. The thing about the auto-immune stuff is that, if you have one of these sort of diseases, you can pass another on to your children. So, the fact that your Mum has PsA means you're a bit more likely than most to inherit a tendency towards some auto-immune form of arthritis though not necessarily PsA. You say you had asthma as a child. That's another auto-immune disease. It's complicated :roll:

    I think your GP's doing the right stuff though he should have prescribed a stomach-protecting pill to go with the naproxen. You could ask for one if you need them between now and your rheumatology appointment. I hope the rheumatologist will get to the bottom of it. Meanwhile, it might help to list your symptoms in a diary to show when you go and also take any photos of any swelling or redness.

    As for the bike – well, if it lays you up for three days it's not helping. Swimming and cycling might help. The right sort of exercise is good but anything that has that result has to be bad, at least for now.

    Others don't understand? No, that's very familiar. Try googling The Spoon Theory and / or There's a Gorilla in My House. They help to explain things to others. Meanwhile, why not join us on Living With Arthritis and Chit Chat? All welcome :D
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Rich;

    A lot of your description sounds very familiar to me. I have PsA and spondylitis and am HLA B27 +. Most of my joints and my back are affected except my elbows. I have enthesitis which causes a lot of indescribable aching. I lost two great careers and some hobbies due to my problems although I'm not as young as you, it's still a huge loss.

    It's very difficult, especially without anything visibly swollen you can point to, to describe to others and have them understand how much pain you are in. I think your mum having PsA is a big clue and seeing a rheumatologist should help set you on the right course for treatment. My doctors, GP's, were not believing either but luckily my rheum has not doubted that I was sick. Mine worsened a lot before I started treatments and I wish it hadn't taken so long to get on them (long story here).

    Best wishes for your rheum appointment. There are lots of really understanding peeps on here and it helps to chat. Take care.

    Anna
  • Gsxrick
    Gsxrick Member Posts: 10
    edited 30. Nov -1, 00:00
    Thank you both so much for your replies. :D

    Sticky wicket: my gp did prescribe me tummy liners ozmeprazol? but I still found it uncomfortable taking them, they seemed to help a bit the first week I took them but I would have taken anything by this point I was at the end of my tether, but haven't had much effect since so decided not to take them if they weren't helping much anyway, the only thing they seem to help with is reducing swelling in my tongue when it swells up, I have no idea why it does this.

    Anna: it really hits hard when it affects everything you have ever known or done, how did you manage?
    The only visible effect I have is swelling in my hands but that has calmed down now I have stopped manual work but still swell up occasionally.

    The only other thing I forgot to add was fatigue! Jeez I thought I knew what 'being tired' felt like. But this is something else but I only seem to have started to suffer with this the last few months but it's bad.

    I think the motorbike may have to go.... :cry: I barely ride it anyways i just don't have the strength or movement or the willing to be in pain afterwards anymore, I have been out for about an hour or two in total in the last few months, will have to replace it with a push bike lol

    I need to get fit anyways as I'm interested in doing something for charity and raise awareness for arthritis uk

    Thanks so much for reading my drivel and wish you both and everyone else all the best
    Rich
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    I take omep to protect my stomach against the nasty effects of taking long-term anti-inflammatory meds, at the moment I have to take 3 diclos per day (I broke my left arm last Friday) but I have not once felt anything in terms of benefit with them - why would I? Their role is both long-term and invisible, it's the diclofenac that has the impact. If you are still taking an anti-inflammatory then please resume the omep - it's better than gaining acid reflux and / or ulcers. DD
  • Gsxrick
    Gsxrick Member Posts: 10
    edited 30. Nov -1, 00:00
    Hi DD.
    Without going into to much detail when I take naproxen it affects my guts and my 'toilet habits' in a fairly bad way and I just don't find they give much relief to my symptoms overall anyway so that's why I stopped taking them.
    I was taking ozmeprazol with the naproxen as advised by my gp but still had the problems above.
    I just take pain medication now 'zapain' which doesn't do to much either but makes it just about bare able during bad days, I probably only use pain killers once or twice a week at the moment depending on how I'm feeling, some days I feel pretty 'good' and others terrible.
    I have my first rheumatology appointment on the 13th of feb i think it is so wait and see what they say.
    Thanks for all your advice and I Hope your arm is getting better and your managing okay.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Rich;

    How did I manage? No simple recipe I'm afraid. I didn't set out to manage and it's been a rough slog. Time has just ticked by and here I am 8 years later still battling away. It helps to focus on the day you are currently living and not look at the big picture, past or future. I fail to manage regularly but I'm still here anyway. I think the fact that I did so many things athletic when I was younger helps; I was still very active right up to 40 (I'm 48). Of course it wasn't enough though! There are so many people with these problems and worse at much younger age, like yourself, and children too. So, I have to feel lucky that I did all the things I did when I was younger. I inspire myself regularly by realising how many people abuse their good health and don't live life fully when they are healthy. I also think about how lucky we are now to have the treatments that are available. I met a man in his 70's the other day with PsA and he'd had it a very long time, most of it without treatment or much pain relief. He was very crippled. I thought a lot about what it must have been like for him every day for all those years....Eeek. I have the benefit of pretty good drugs for pain and although so far my PsA hasn't been responding to immunosuppressants, I'm very glad they are there to at least slow it down.

    My husband is incredible and, though we nearly split up over my problems, he is immensely capable and does the work of two without complaining (....much :D ) (here's me with my fingers crossed XX that his back holds out and/or he doesn't get sick too :o ) He's very affected by my problems, for example gave up his motorcycling hobby and traveling etc. So I feel I owe lots to him and must keep trying new things to help myself and improve life for both of us.

    I guess I believe that you owe it to yourself and those around you to keep trying.......plus I'm completely and irrationally optimistic.

    The best solution is treatment with disease-modifying drugs that potentially can give you your life back!!! My advice? Keep fighting for help for yourself. I really hope you are offered diagnostics/treatments when you see the rheum in February. Please keep us updated on how things are going for you. There is a wealth of experience good and bad on here and it's really helpful to know people are here that can help you know if you are on the right track treatment-wise, or if you need to complain, etc. Best wishes,

    Anna

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