Wading through treacle

Starburst
Starburst Member Posts: 2,546
edited 13. Nov 2016, 13:35 in Living with Arthritis archive
I'm struggling to keep myself upbeat but trying to avoid plunging back into depression is like wading through treacle.

Before I was developed RA, I was formally diagnosed with Hypermobility Syndrome, although it had been suspected since I was about 13. Over the last few years, I've developed a lot of health problems that didn't seem to make sense. It's all been tied together and it's looking likely that my multi-system problems (stomach, intestines, heart rate, blood pressure, bladder and neuropathy) are due to a hereditary connective tissue disease similar to Hypermobility Syndrome. It's been explained that it's not only my joints that are "bendy and stretchy" but my organs too, hence why they don't function normally. Bizarrely, I have some joints that are very hypermobile and some that are very immobile which is a double whammy. This is why I am abnormally disabled and in pain that cannot be attributed solely to RA.

I've got to have lots of tests, particularly for my bladder and bowel, which are unpleasant and undignified. I don't particularly want to go on my own but feel guilty asking people to take time off work to come with me. The specialists are all in London and I find trains and tubes hard work. It's 2016, why can't public transport be more accessible?! It's also going to mean time off work which makes it stressful when I'm catching up. I'm gutted that the next few months are going to be filled with poking and prodding and then I'm going for my jaw surgery. I feel like I can't catch a break.

Sorry to be gloomy. I'm sure the cold weather and dark evenings aren't helping much. I don't want to sink into a dark place. I don't expect to be cheery all the time but equally, I need to get it all out, otherwise it bubbles over.

Thank you, as always, for listening to my word splurge.

P.S. I missed my 7 year forumversary. Oh how time flies!

Comments

  • mermaid
    mermaid Member Posts: 104
    edited 30. Nov -1, 00:00
    Dear Starburst,

    Just wanted to say how sorry I am that you are going through all this. To have so many health problems can seem insurmountable.

    Travelling to and from appointments while undergoing invasive tests is so very difficult and makes us feel insecure too.

    Can you investigate any hospital transport schemes for some of these appointments? There are various schemes depending on where you live. Taxis are expensive but there have been times for me that they have been lifesavers!

    Just know that I really understand your feelings and you are not alone throughout all of this
    Sending hugs, Liz xx,. Wish I could help more.
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    hi , I am sorry you are having these problems , with RA there are some other health problems that go with it connective tissue like Sjögren's syndrome,

    with Hypermobility Syndrome you can get other problems with it , most people grow out of having hyper mobile joints in their 20's , one thing my family has is Ehlers-Danlos syndrome (EDS-hypermobile type (EDS-HT), also known as EDS type III,)

    its worth looking up & talking to your GP/Consultant
    http://www.nhs.uk/Conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Just wanted to send some sympathy and understanding. Having more than one ailment is hard enough, to have several with all the investigations and treatments makes it feel like life is one long round of medical appointments.

    Maybe treating yourself to a taxi home after appointments is worthwhile to give you time to get your head round what's been said.

    Thought a few hugs might be appreciated (((((((( )))))))).
    Keep talking, it's often more manageable when you can actually verbalise what it is that's happening and how you feel about it.

    Deb xx
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you, all kind words and hugs are appreciated. I had a little cry last night and it seemed to help. I broke my rule of not eating Christmas food before December and had a mince pie which sadly made me very sick. Then I had some shortbread biscuits which are my favourite and they settled my stomach.

    I'm not entitled to hospital transport, which is fine, I wouldn't expect to be. I could get a taxi but I get car sick. :roll: I might drive myself if I feel up to it. I think it depends on what's happening. I wouldn't drive before a test but it's fine for an ordinary consultation.

    Trepolpen - it is Ehlers Danlos Syndrome that they suspect I have. My consultant said I was unlucky that I got RA as well but I have a close family history of autoimmune diseases and my RA was triggered by a case of the flu. I'm trying to get my head around it all. One doctor put it quite bluntly, he said that I can ether be sad that I have so many things wrong with me or be glad that I have one condition that explains it all. He then went on to talk about treatment and he was positive which gives me hope. I'm clinging onto that!

    Right, that's me wiped out. Night night and thank you again, lovely people.
  • mig
    mig Member Posts: 7,152
    edited 30. Nov -1, 00:00
    Sending hugs. (((()))) X Mig
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    hi Starburst , dont know that much about EDS but got alot of the symdoms but not all , had RA for over 20 years & Diabetes & need TKR but they wont it until other health problems have improved

    my Son we thought maybe had EDS but they said it was fibromyalgia but in his 30s still has hypermobile joints & they will go out of place . My Niece around same time they said Chronic Fatigue Syndrome but now say she has EDS as well & several of their cousins got hypermobile joints

    hope they can sort some treatment for you , imagine hydro would help alot , having RA dont help with hypermobile joints
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh Sophie, I am so very sorry to read your posts. Yet again you are under a substantial cosh and, as usual, doing your best to fight your way out. All I can offer is my support. ((( ))) xxx DD
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you for your kind words. I'm going to back to basics with pain management. I'm trialling ice, heat and my TENS machine. My dad and I aren't that close but he's in between jobs at the moment and I know I if asked, he would give me a lift part of the way which saves some walking especially as he only lives 2 miles from me. I'm just not very good at asking! :oops:

    I'm getting my head around this new condition and my gastro said it makes a lot of sense. He's given me enough medication to make me rattle and I'm feeling better. Being off work isn't much fun but equally, vomiting and fainting at work isn't much fun either. I'm hoping to be back on Monday. I have square eyes from staring at screens and I'm running low on PJs. I'm finally sleeping less though which must mean I'm on the mend.

    :sick-in-bed:

    Here's to getting back to work and avoiding Jeremy Kyle!
  • barbara12
    barbara12 Member Posts: 21,279
    edited 30. Nov -1, 00:00
    Hello Sophie
    I am so sorry you have all this to deal with, you have been so strong and just got on with things..you keep talking to us lot ..and I do hope you get all the help you need..and hopefully back to work very soon..(()) xx
  • stickywicket
    stickywicket Member Posts: 27,219
    edited 30. Nov -1, 00:00
    I just hope something works. Yes, let your Dad help. Take whatever's on offer. ((( )))
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have been thinking of you, I hope you are feeling a little more like your usual self. Do not be afraid to ask for help from family, friends or strangers, kindness is out there but only shows when we request assistance. I realised some years ago that asking for help was not a sign of weakness, if anything it showed strength as it helped me preserve my necessary energies for the better things in my life. DD