These last 2 weeks have been hell,Thanks for all your good wishes and kind and helpful comments.
The chest infection which was a nasty one and difficult to treat, has thankfully cleared up.But as i had a terrible cough it has had an impact on my back and i have a prolasped disc now which is so painful and unbearable at the moment.
Thankfully i have lots of family and friends who have been very surportive and have rallyed round to help.
I'am mentally stronger and im using all my coping strategies to good effect,where it comes to pain i tell myself "I don't mind that it hurts"...Hopefully my Bad Back will improve but at least ive got a Good Front!!
I hope everyone is fighting hard and coping well.
popshaw21
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popshaw21
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Good on you, I had wondered how you were doing, please continue to get better, and I hope physio, or similar can help with your back? and thanks for your cheerful check in. Mary F x
Hi jillymo,Thankyou for your up beat message and i hope your spirit is up beat too.
I had major surgery on my spine(Laminectomy)in 1997 which they removed 2 damaged disc's and decompression of my spine which i wish i had'nt agreed to as the operation caused more problems,and has weaken the disc's above and below the spinal fusion.
Since then I have been in constant pain with sciatica and sometimes i only have to sneeze and my disc will slip,I have been offered another operation which i have decided not to go ahead with as im at a higher risk of infection.
I did go to The royal hospital for rheumatic deseases in bath as they have an excellent pain clinic, and they taught me how to cope with the pain.so when you go to your appointment at the same hospital i use to go for treatment not only for the hughes syndrome ask them about the pain clinic.
You really have had a rough time of it, I should think you did need pain management. I have a curvature of the lower spine & that used to give me horrendous pain but glad to say it has eased off.
Was it Bath that diagnosed the hughs ? I think my problems could be Lupus but I shall have to wait & see what they find.
They was going to send me to the pain clinc for my fibro myalgia but as i think I told you I couldn't get hospital transport to get me there at the time.
I have had one of those days where I dont feel fully awake so havn't done much today'
I think it's going to be a coffee & off to bed.....nothing on tv that is of interest to me.
Hi jillmo,I know how your feeling i have had lots of those days of feeling washed out I hope you have a peaceful sleep and a better day tomorrow.
I was diagnosed with hughes syndrome when i had a stroke while i was being treated at the pain clinic in bath and they ammitted me to one of there wards,and it took them over a week of testing before they told me i had APS.
The nursing staff where brilliant and very caring,i can't thank them enough.
I met my wife cherie there, who had rhuematoid arthritis and we spent 2 happy weeks together,what was so good about being in bath hospital (The Min)was you could go out in the evening for a meal or just to walk around the city.
Great days
They also have a good understanding of lupus,so i hope they can help you
What a rotten day we have here in Swindon I hope it is better in your part of the country.
If not you will have many a miserable holiday maker strutting around.
I might have hit a hurdle Pops with regard to my visits to Bath !
It seems if it is your first appointment the transport office arrange the transport but any follow up appointments the hospital or Gp has to arrange the transport.
Last time Bath refused to arrange it saying it was down to my Gp the Gp said 'it was down to bath to arrange my transport.
This was how I got caught last time I could not get back to see them have you any sugestions ?
How was your bank hol did you go bungi jumping' or scuba diving, parachuting maybe ? In our dreams..
Hi jillymo,Do you recieve DLA?or income surport?maybe try and put an
advertisment in your local paper to see if anyone works in bath who would give you a lift to your appointment and offer to pay something towards the petrol,then you only have to pay for your return journey.
Otherwise i can't think of anything else only to keep on at your GP about the help you need.
I had a lousy day on monday,I was totally washed out and in alot of pain which meant i spent most of the day in bed.
I'm feeling a bit better today,yesterday the district nurse checked my INR which had dropped to 1:3 which may exsplain why i was feeling so washed out on monday and yesterday.My iNR range should be between 3-4
The doctor has put me on a higher dose of warfarin and to be tested again on friday.
well i will look into the transport issue and see what help there might be out there,if i lived closer to you then i would get you to your appointments.
I hope you have a peaceful week and if i can find a way to sort out your transport issue then i will let you know.
Hi jillymo,I think the transport has to be paid by the DR funding which means the DR has the power and responsibilty on how much money they have in there fund. I would change my DR if i was you and just keep pestering them and
when you see the consultant in bath ask him to write to your DR about getting help with the transport.
I take iron tablets,+multivitamins they can help so maybe give them a try.
well i hope you are getting some good pain relief?I take co-proxamol which works for me.I asked my DR to put me down as a "named patient,it had been unavailable as alot of people where committing suicide
Your DR can prescribe co-proxamol if your listed as a "named patient"which your DR has to put you on the qualifying list and theres a small charge which the DR gets from there funding.
well i hope your appointment go's well and write down a list of all the questions you need to know and how the way your condition affects you daily.
best wishes and i hope you'll be feeling better soon.
Thankyou for your message Kerstin,the chest infection has cleared up completely now.
I'm still struggling with the back pain,and its very difficult to get off to sleep and im waking up around 5 am every morning and i have to get up as im in so much pain.
The main thing is im mentally stronger,and i use all the coping strategies Ive learned over the years to get me through the day.
The weather is lovely here today,and im hoping to go for a walk with poppy my little jack russell.
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keep getting better & improving x
not getting any better
Hi all, a little intro..
Newly diagnosed, saying hi!
hi all
