CAN ANYONE HELP ME PLEASE

cbrailsford

I HAD AN MRI SCAN DONE IN MAY THIS YEAR AND WAS DIAGNOSED WITH ARTHRITIS IN MY BACK, ITS VERY PAINFULL, IVE HAD PHYSIOTHERAPY FOR JUST 3 SESSIONS NOW ITS ENDED, I WAS SUPPOSED TO GO TO A PAIN MANAGEMENT CLINIC AS REQUSTED BY THE OTHOPEADIC SURGEON, I HAD TO GET REFERED VIA MY GP WHICH I DID, BUT 2 DAYS BEFORE THE APPOINTMENT, I GOT A CALL SAYING THERE WAS NOT THE FUNDING FOR IT, MY GP IS APPEALING AGAIST THE NON FUNDING, IVE TAKEN CO DYDRAMOL PAIN KILLERS, I TAKE ONE 60GR MORPHINE TABLET AT NIGHT, IVE TRIED TAKING ONE IN THE DAY BUT IT MAKES ME DIZZY AND TIRED, I KEEP ACTIVE AS I CAN, BUT I CANNOT EVEN BATH OR SHOWER WITHOUT BEING IN AGONY THE FOLLOWING DAY, IT JUST HURTS SO MUCH, I FEEL SUICIDAL MOST DAYS AND SPEND HOURS CRYING WHY CANT THIS PAIN GO AWAY, ANYONE GOT ANY SUGGESTIONS PLEASE, IM REALY IN PAIN HERE, THANK YOU

barbara12

Hi and welcome
I have OA in my back and a couple of other places, I am still working my way through different meds , this seems to be the norm, seeing which ones work.
I was referred to a pain clinic, the first thing they did was to give me 3 injections in my back, sadly they did not work for me, but some people get great relief from them.
I now take solpudol 500_30 gabapentin for the nerve pain this seems to help and amitryptalyn at night to help me sleep.
It is a case of trying different meds to see which suit you, I hope this helps a little.
please let us know how you get on , and take care
Barbara xx

elnafinn

Hi there!

I am very sorry to read your post. It is such a shame that, first of all you did not get 6 physio sessions and then to be told that you can not attend the pain clinic is awful. Have you been diagnosed with OA, RA or another type of arthritis? You gp is trying his best with appealing against non funding.

You will be made very welcome here. You are amongst friends now, who all have some kind of arthritis or more than one and we all try to help and support each other. You are not alone with it anymore. Is there another pain clinic that you could perhaps attend, in another county? I was really helped at a pain clinic with injections in my lower back which so far I have been pain free for 6 months - I was suffering from sciatica for over a year.

It may be a good idea to call or email the helpline. The number is at the top of the page. Many people have been greatly helped by them. They are all excellent listeners, very patient and I think you may well feel relieved that you contacted them.

Do keep calling in. I am sure others will answer your posting soon.

In the meantime, chin up,

Hugs
Elna x

dorcas

Hi.....

I am so sorry to hear of all you've been going through. it is awful that the funding is not available for the sessions which your ortho had recommended.

from reading your post though the immediate issue(s) for you are the constant, dreadful level of pain and the way it makes you feel..... no-one should be left trying to manage their pain and feel so low in themselves without proper support and follow up from the GP... have you spoken to your doc about the severity of the pain in your back? does he know that the pain relief isn't adequate and that the pain is overwhelming and has made you feel so desperate?

while you wait for the funding problem to get sorted please contact your doctor and tell him how about the pain and how you are feeling... and ask for help..urgently.
If the pain is so severe over the weekend phone nhs24 for advice or present at A&E.

Do you have family or a close friend who can be with you just now....?

I am so sorry you are going through this.....please know that you are not alone...we on the forum are here for you and willing to help if we can.

Iris x

barbara12

Hi it is me again
Just a thought, but a couple of years i went to the walk in center, I was in so much pain they gave me an injection of morphine just to get me over the weekend, but you will need someone with you, it dose make you very groggy.
We are always here when you need us.
Barbara xx

elnafinn

Hi again,

Acupuncture can help back problems but I do not suppose that will be available for you either with the funding issue.......

There are a lot of meds out there to ease pain and inflammation, so hopefully your gp is aware of them. That is where the pain clinic is so good, because the medics there, all have that knowledge.

As the meds are not touching the pain and giving you nasty side effects, I hope you keep going back to your gp so you can try something else perhaps. If you do not tell your gp, he will not know that the meds are not helping and making you feel dizzy.

Look after yourself,

Elna x

carola

I am so sorry to read you are in so much pain and distress.

Please go to your Doctor or telephone them for an emergency home appointment as when they see you in such a distressed state they may be able to take action pronto.

Please also phone the helpline at this website also.

I know it is difficult to agree just now but you will get help and you will definately have better days. Cry when you want to and smile when you can.

Please keep us updated and moan and rant when you need to .... we all do it here.

I am sorry I do not have proper advice for you but please take strength that we all root for each other on here and I hope you get some relief soon.

Sending much positivity, Carol x

speedalong

Hi and welcome,

No additional advice to add, just wanted to say keep reading and posting - persist with the GP to experiment to find the best meds for you whilst you wait for him to obtain the pain clinic funding. Stress makes our tolerance to pain lower - so anything you can do to help yourself relax will help too.

Keep in touch,

Speedy

skezier

Hi Cbrailsford,

I am sorry your having such a hard time and that they have cancelled your pain clinic cus of funding.... I think that's terrible actually!

Like Barbara I have oa in the spine and neck and it does hurt some! I take pregabalin and well its really helped with the pain so much. Its kinder to you than morphine, which isn't a nice drug to have too much. I also take tramadol ad diclo's and luckily the see me at the pain clinic every 8-10 weeks. I hope you will get the same help soon!

I do hope you get the funding and some pain help soon. Its hard but you have to keep pushing at it and hopefully you will win and the pain clinic will help you. Nice to meet you. Cris x

woodbon

Hi,
Its so sad to read a story like yours. I don't have any advice except write your MP and local paper, if you feel up to it. The more fuss sometimes the better. Sometimes the money appears if the powers that be feel shammed. I wish I had a better answer, sorry.

Lets all hope that your GP wins an appeal for you. I really hope that is what happens.

Lots of love Sue

bubbles

Hello and welcome, sorry to hear that you are in so much pain, a lot of us can sympathise with how you are feeling. The circle of pain, lack of sleep, low mood, more pain, anxiety, increasing low mood, is one that is hard to crack, but, you are the master, not the arthritis. Remember you are not alone, there are a lot of us who will help as much as we possibly can and will be here to chat and offer any advice we can.

People are right in saying see your GP, he is the first point of call. If you cannot get an appointment, then ask for a home visit. You need to get the pain under some sort of control.

You say that you are taking co codamol, not that I am your GP, but, as others have said, amitryp can help with the pain and also help you to rest at night, then there are pregablin or gabapentin, that help reduce the pain sensitivity, also, the pregablin helps you to relax.

Morphine based pain relief does not work for all people and sometimes can have the opposite effects. A good talk with your GP is certainly the thing to do, they may even start you on some short term sleeping tablets and or anti depressants. Arthritis sufferers are often burdened with depression, I am one of them, it is nothing to be ashamed of, it is simply a reaction to the circle that I mentioned before.

Let us know how things go over the next few days and please post night or day, there is usually someone about, to offer a listening ear. Many of us are up at all hours of the night. Sending lots of hugs and Care,

XXX Bubbles

frogmorton

Hello

and welcome to the forums from me.

I am so so so sorry you feel so awful.

This is what arthritis can do to you.

You have to speak to your doc - I know others have said this - he needs to understand that you are feeling suicidal at times not just in agony.

Ring the A/C helpline if it's open - if not ring the samaritans if you reach rock bottom - dont go there.

Lots of us have felt that bad with this you are not alone.

Have you any anti inflamatories to go with the co-dys??? Have you tried a tens? Have you tried hot or cold packs? At the moment i am using all od these to get by myself and i think the combination of all of them can just take the edge of. I also have amitruptyline to take at night wich helps too. Yor morphine may well stop you having it though. need to check with doc.

A/C do pain management course too which might help.

Main advice....

come on here and talk see doc and talk if in real trouble phone samaritans or A/C helpline and talk.

You are NOT alone

we are here.

Love

Toni xx ((()))

dorcas

How are you feeling today?

still thinking about you....

Iris x

lavenderlady

I feel so sorry for you, I've got arthritis and spondelothesis in my back leaving me in a great deal of pain, I had an appointment with a pain control clinic where he saw my back and how badly it was, he gave me gabapentine which I take not only for my back but nerve pain resulting from my SMA ( nerve pain) it helps a lot as does 3 Amitriptyline every evening, I also take zapain dehydrocodeine and tramadol depending on the pain level, maybe we can all list our medications to see whats being used in general and how they are helping us to cope with the pain, hope you find soemthing that helps and next time you see a DR any DR cry, i find this helps to get the best results after it happend to me I was mortified I had cried in front of my Dr yet he then could see how badly it was affecting me and things changed from then on, good luck

cbrailsford

HI,
I WANT TO SAY A HUGE THANK YOU TO ALL THAT HAVE REPLIED TO MY MAIL, I CANNOT TELL YOU ALL HOW OVERWELMED I AM THAT YOU ALL CARE ABOUT ME SO MUCH, THANK YOU SO MUCH FOR THAT, I HAVE BEEN DIAGNOSED WITH O.ARTHRITIS, BUT THE ORTHOPEADIC SURGEON I SAW, JUST DIDNT WANT TO EXPLAIN THINGS TO ME REALY, HE JUST SAID AS SOON AS I WENT INTO THE CONSULTING ROOM, HAVE YOU BEEN TO YOUR GP FOR YOUR MRI SCAN RESULTS, I SAID TO HIM THATS WHY IM HERE, AND HE GOES WELL YOU GOT O.ARTHRITIS, THERES NO OPERATION THAT I CAN DO, HE DIDNT EXPLAIN ANYTHING TO ME, JUST SAID THAT I NEED TO GO ON A WEIGHT MANAGEMENT PROGRAMME, IM NOT OVERWEIGHT, I ASKED ABOUT THE INJECTIONS IN THE BACK, HE GOES OH WELL THEY ONLY LAST 4 WKS, IT WAS ME WHO SAID ABOUT PHYSIOTHERAPY, AND HE GOES WELL YOU WILL BE WAITING A YEAR FOR THAT, I SAID ABOUT PAIN MANAGEMENT CLINIC HE JUST SAID WELL GO AND SEE YOUR GP THIS AFTERNOON, WHEN IT WAS 4.45PM ALREADY, I EXPLAINED HOW WAS I GOING TO SEE MY DR THAT DAY, THEY CLOSE AT 5PM HE GOES WELL TOMORROW THEN, HE COULD NOT GET ME OUT OF THE CONSULTING ROOM QUICK ENOUGH, I LEFT THERE IN TEARS , THE FOLLOWING DAY I SAW MY DR WHO REFERRED ME TO THE PAIN MANAGEMENT CLINIC, HE EVEN GAVE ME A PRINT OUT FORM TO PHONE THE HOSPITAL FOR AN APPOINTMENT, WHICH I DID AND IT WAS CANCELLED LESS THAN 48HRS BEFORE I WAS DUE TO GO THERE, IT WAS MY OWN DR WHO GOT ME THE PHYSIOTHERAPY, AND I GOT JUST 3 SESSIONS, AND TO MAKE THINGS WORSE I HAD A BAD FALL IN THE GARDEN A COUPLE OF WEEKS AGO AND WAS UNABLE TO DO ANY EXERCISES THAT THEY PHYSIO GAVE ME, I WENT FOR MY APPOINTMENT LAST WEDNESDAY AND I TOLD THE WOMAN THERE THAT I HAD NOT DONE THE EXCERCISES DUE TO MY FALL IN THE GARDEN, I FELL OVER ON MY BACK ON THE CONCREATE PATHWAY, I WAS UNREELING THE HOSE REEL FROM THE WALL, AND I WAS WALKING BACKWARDS AND THE HOSE GOT TANGLED ROUND MY FOOT AND I FELL OVER FLAT ON MY BACK, IVE JUST BEEN TAKING THE CO DYDRAMOL, THE DAY I WENT TO THE DR ABOUT THE NON FUNDING OF MY APPOINTMENT FOR THE PAIN MANAGEMENT CLINIC I DID SAY TO HER THAT I CANNOT COPE WITH THE PAIN, SHE JUST LOOKED AT THE SCREEN TO SEE WHAT PAIN KILLERS I WAS ON AND SAID TAKE PARACETAMOL ON TOP OF THE CO DYDRAMOL, BUT MY PHARMACIST FRIEND SAID DONT TAKE MORE PARACETAMOL, CO DYDRAMOL HAD PARACETAMOL IN IT, IVE JUST BEEN COPING BEST I CAN REALY, WHEN MY SON PHONES, I JUST BREAK DOWN AND CRY, HE GOES MUM YOU WANT ME TO COME AND STAY WITH YOU FOR A FEW DAYS, BUT HE LIVES IN DERBYSHIRE AND IM IN HERTFORDSHIRE, HE DONT WORK AND CANT AFFORD TO COME HERE, AND HE HAS HES ONE YEAR OLD DAUGHTER TO LOOK AFTER, IVE GOT A PARTNER WHO I LIVE WITH, BUT HE WORKS, HE DOES SHIFT WORK, DOES 2 DAYS 4AM UNTILL 1PM, 1 11AM UNTILL 8PM THEN ONE LATE 1PM UNTILL 10PM, SO I HAVE TO STAY UP LATE AND COOK LATE SOME DAYS, LIKE TODAY, HE WONT BE HOME UNTILL 10.30PM, I TRY TO KEEP ACTIVE AS I CAN, BUT IM NOT COPING AT ALL, I DARNT HAVE A BATH AS I WILL NOT BE ABLE TO MOVE TOMORROW, I WILL TRY AND SEE MY DR THIS COMING WEEK, MY PARTNER AND I ARE GOING ON HOLIDAY ON THE 18TH UNTILL THE 24TH JULY, I WAS THINKING OF BUYING SOME OF THOSE HEAT PATCHES FOR MY BACK, HAS ANYONE EVER USED THEM, I DONT WANT TO BE DRUGGED UP ON HOLIDAY, ITS JUST TO THE ISLE OF MAN, SO HOPEFULLY I WILL BE OK, IF IVE NOT HEARD SOON ABOUT MY DRS APPEAL AGAINST THE NON FUNDING OF THE PAIN MANAGEMENT CLINIC, IM THINKING OF GETTING SOME PRIVATE TREATMENT, CANNOT GO ON LIKE THIS, I WILL ALSO PHONE THE HELPLINE NUMBER ON HERE TOO EARLY IN THE WEEK, IVE TAKEN IT FAIRLY EASY TODAY, JUST RESTED A LOT, I DID TAKE MY DOG FOR A WALK TODAY AND WENT TO THE LOCAL SHOP, BUT IVE HAD TO KEEP TAKING PAIN KILLERS EVERY 4 HRS, I PREPARED A SALAD FOR DINNER TONIGHT, JUST HAVE SOME FISH FINGERS WITH IT, MY PARTNER IS NOT WORKING TOMORROW OR MONDAY, SO AT LEAST I WILL HAVE HIM AROUND FOR TWO DAYS, HE DOES THE COOKING ON HES DAYS OFF,BUT IM NOT THE TYPE JUST TO SIT AROUND ALL DAY, IM ACTIVE ANDITS SO UPSETTING TO BE TOLD IVE GOT O.ARTHRITIS, THAT ORTHOPEADIC SURGEON JUST DID NOT EXPLAIN, HE DID SHOW ME MY MRI SCAN, BUT IT DIDNT MEAN A THING TO ME, AND HE JUST COULDNT WAIT TO BE RID OF ME, HE JUST SAID GO ON WEIGHT LOSS PROGRAMME, MY GP SAID THERES NOTHING WRONG WITH YOUR WEIGHT, HE ALSO WROTE TO MY DR SAYING HE SAID ABOUT CYCLING, SWIMMING, YOGA ETC, HE DID NOT, ANYWAY MY DR SAID HOW CAN YOU DO CYCLING, YOGA ETC WITH YOUR BACK, ANYWAY I JUST WANT TO THANK YOU ALL SO MUCH FOR YOUR CARING TOWARDS ME,AND IM SORRY TO GO ON, YOU ARE SUCH A GREAT SUPPORT TO ME, THANK YOU ALL SO MUCH, AND I WILL TRY AND GET TO SEE MY DR THIS WEEK, THATS IF I CAN GET AN APPOINTMENT THAT IS, HOPE I CAN AS I GO AWAY NEXT SUNDAY, ITS JUST A COACH HOLIDAY, THANK YOU ALL AGAIN
CHRISTINE

barbara12

Hi Christine
I know it dosnt seem like it just now, but you will get there, you do start to adapt, and you have to find the right pain relief for you, so keep on at your GP.
The heat patches do help, but you might have to just reduced your pain meds a little bit for in the day, like you say you dont want to be in an haze all day.
Also buy a couple of wheat bags that you warm in the microwave, these do give some relief, I know if you are in a hotel this wont be possible, but you can use then at home.
Dont forget we are always here to support one another, so you are not on your own.
Barbara xx

dorcas

Hello Christine,

if there's one thing about this forum...it's that the peeps on here really do care. and many have had similar experiences to you so know and understand exactly how you are feeling.

you sound exhausted... and also shocked at getting the OA diagnosis and that is understandable given that your ortho did not take enough time to explain the results of the MRI or what having OA would mean.

It might be a good idea to have time to talk through the results with your doc.... and for that I think you would need to make a double appointment? it also gives you time to discuss the medication you're on and what alternatives there might be that would be more effective at controlling your pain.

you are right about co-dydramol it does contain paracetamol so you have to be very careful not to 'double up'; check with your pharmacist about safe dosage ..they are usually very helpful and will give good advice.

you are coping with a lot just now and it must seem as though you are fighting this illness alone; but you have family who obviously care about you and a son who wants to help......even though he is a distance away.
sometimes though we need to be able to share how we feel with someone out with the family...and I'm glad you have decided to phone our helpline. they will help you I'm sure.

I also wondered whether you had seen OT? they can assess and help people by providing advice & aids for the home that might take the pressure off your back.

I do hope you feel a little better today and know that we are here to help if we can.

Iris x

cbrailsford

Hi Barbara,
Thank you for your mail,
I will go to the drs this week and see what other medication I can have, as Im not coping with the medication I have, thanks for telling me about the wheat bags, I will give them a go, my partner is home today and tomorrow, hes cooking chicken today, just having salard with it, Ive just taken 2 more co dydramol tablets, thats 4 ive had today, I will get a shower later, I have to have a shower when my partners here now, as the medication makes me dizzy, thank you again for all your support, have a great day take care
christine

cbrailsford

Hi Iris,
Thank you so much for your mail,
I realy so appriciate it so much,
I have not been seen by an o/t, thats something I could talk to my dr about, I will phone the surgery tomorrow morning to see if I get an appointmet to see her or who ever is on there, our doctors is very difficult to get appointments with, you have to phone on the day in most cases, you cannot book appointments for say a couple of days time, its so awkward, I do overdo things here I know that, but things have to be done, Ive rested a bit today, as my partners here at home today, ive just taken another couple of co dydramol tablets, hope to get a shower later when my partners watching the final of the world cup, hed doing dinner today, chicken and salard, its so hot here today, that doesnt make things any easier either, anyway thank you againf or being so caring and taking the time to mail me, I do appriciate it so much
take care
christine

trisher

Hi Christine

I just popped in to say hello to you. I know what it is like to have pain that will not go.

I do hope that you can get some relief from it. I wish there were more I could do to help you too.

Christine, we are thinking of you.

love Trish xx

skezier

Hi Christine,

Personally flower I don't think its being managed properly..... I think your being let down a bit actually.I also have oa at 3rd and end stage from L1 down and all of my neck as well, that's got a 'bit' of pa in it as well.....

The pain clinic could help more! Can you remember what the MRI said? We might be able to translate t better for you? I really think you should go back to your gp and if possible get a double appointment and explain its just not helping re pain and can you have a total review of the pain and anti inflammatories..... I really hope they will.

Hang in there and hopefully you will get a bit better treatment! Nice to meet you (might have said that before :oops: ) and enjoy your trip. Cris x

Oh I have a few jabs, some every 8-10 weeks..... it really helps so there is every point trying them! I really do wish you had a bit better management for the pain. Try your gp again, if they wont.... see a different one cus with decent pain control its not so bad.

dorcas

Hi christine

glad you have been able to rest a bit more today and that your OH is doing the cooking. ...remember to accept all help that is offered as it not only helps you but makes others feel as though they are doing something useful to support you.

fingers crossed you get an appointment tomorrow..please write down how you've been feeling and how arther is affecting you including which joints are sore or stiff, the type of pain and how long it lasts and whether you are sleeping.

ask for a review of your medication so that you get proper pain relief and ant inflammatories. will you have someone who is able to go with you for your appointment? can be helpful to have someone as a support and who can speak up if you forget anything.

we will be thinking about you . let us know how you are and remember our helpline is available in the morning too if you need someone to talk things through....

Iris x

dorcas

.....hope you are okish today and get to see the doc.

Iris x

cbrailsford

dorcas wrote:

.....hope you are okish today and get to see the doc.

Iris x

HI IRIS,
THANK YOU SO MUCH FOR YOUR MAIL,
SORRY IVE NOT BEEN ABLE TO REPLY FOR A FEW DAYS,BUT IVE JUST BEEN TAKING IT EASY HERE, MY BACKS STILL VERY SORE, IVE TRIED TO GET AN APPOINTMENT WITH THE DR, BUT WITHOUT SUCCESS, I HAVE PHONED EACH DAY AT 8AM AND ITS SO HARD TO GET THROUGH AND ALL I GET IS SORRY NO APPOINTMENTS, SO I WENT ON THE INTERNET AND MANAGED TO GET AN APPOINTMENT WITH MY OWN DR ON JULY 29TH AT 10.30AM, SO THATS AFTER MY HOLIDAY, BUT ITS WITH MY OWN DR AND I WILL JUST HAVE TO ASK HIM IF THEY HAVE HEARD FROM THE PRIMARY HEALTH TRUST RE THE FUNDING ISSUE AND ASK HIM WHAT ELSE I CAN HAVE AS THE PAIN RELIEF I HAVE IS NOT ADEQUOTE ENOUGH, IVE JUST BEEN CARRYING ON BEST THAT I CAN DO, IVE BEEN RESTING IN BETWEEN DOING THINGS, THIS WEEK IVE BEEN DOING THE WASHING EVERY DAY AS WE GO AWAY ON SUNDAY, I PRE DID OUR DINNER FOR TONIGHT THIS MORNING, MADE SOME FRESH FISH CAKES, JUST GOT TO BROWN THEM IN THE OVEN, JUST HAVE SOME PEAS WITH IT, I HAD AN EARLY NIGHT LAST NIGHT, WAS SO TIRED, WAS IN BED AT 8PM TOOK ONE MORPHINE TABLET, WAS AWAKE AT 2.30AM AS MY PARTNER WAS ON EARLY SHIFT TODAY, I DRIFTED BACK TO SLEEP AND WOKE UP AT 8AM BUT I WAS VERY STIFF AND MY BACK WAS REALY SORE, JUST BEEN TAKING THE CO DYDRAMOL FOR NOW, I HOPE YOU ARE OK THERE, AND I THANK YOU SO MUCH FOR YOUR SUPPORT, I DO APPRICIATE IT SO MUCH, TAKE CARE
CHRISTINE

skezier

Hi Christine,

Just answered your pm and well leaving you a ((((( ))))) and a hope. Cris x