HELP ME, Please, what do I do?

KittyKate

Hi, sorry to moan but I am desperate. I have been in agony with my back lately. Every night I wake in agony, take my pain killers and pray that they will help. Every night its getting worse. Its now so bad where I dont see the point in rolling over and reaching for the tramadol. Theres no point, its not helping. I cry every day. I am crying now. Since october my lower back and hips have got worse and worse and I dont know what to do. Finally a doctor has turned around and said my pain is real and coming from my scarolic joint and sciatic nerve where as for 5 years I was fobbed off with Symphisis pubis dysfunction from pregnancy. I am miserable and at wits end. I have a rheumatology apointment on the 24th but I cant wait that long. I know I have waited long enough but I am almost out of tramadol and it doesnt help much anyway.

I really dont see the point in getting up off of the sofa for the pain killers. Is so hard to get up. It took an hour to pluck up the courage to get up and take my other meds earlier. I keep stopping typing and biting down on my hand because I am in so much pain.

I have no idea why I am in so much pain I havent been diagnosed yet. I am very tempted to go to casualty and beg fo them to scan my back. Its not about pain releif, I just want them to find out whats going on. If they think I am one of those people that just goes for pain killers then I will prove it by not having any. But this cant go on. I cant do this anymore.

What do I do? This is almost as bad as being in labour.

dreamdaisy

I am an old hand at pain and I know the more you focus on it the worse it becomes. You need to distract yourself from it, give your mind something else to focus on and think about, be it a good book, a film, a puzzle or something on the telly. Pain killers do not take away the pain - I am sure the tramadol is having an effect, it will deaden some of it but it won't remove every vestige of the pain, simply because it doesn't. No pain killer does. Take some more when you can and try to lessen your focus on it all. It is an aquired art but it does work, really it does. I wish you well. DD

sullivt56

had exactly the same happen to me back in august even went to A& E twice on the same night. first visit got morphene injection but didnt cut it. went back two hours later and doc just said nothing they could do i had 100ml bottle of paracetamol intravenouslly go home take the tablets.
i was taking the max amount of co-codamol and tramadol. my GP also gave me gabatine. did eventually calm down but i didnt believe it at the time.
my mistake was not insisting that i saw a rhumotologist on second visit to A&E. have been under the rhumo consultant for years so i think they would have seen me.

Hope this helps in some way the only thing i could do to minimise the pain was stand on one leg. i fully sympathise with you. I have never experianced pain like it in my life.

KittyKate

thanks for the replys. I have tried so hard to cope I really have. I spend a lot of time trying to take my mind off of it by playing sillky games on facebook and watching tv but its too hard. The pain is reaching down my bum, thigh and right leg, down to my knee as well tonight. My other leg is more numb than ever.

I also take gabapentin which I started taking for chronic migraine but it only made a slight difference to my lower back pain. It just made the niggling feeling disapear. I take diclofenac as well and also use piroxicam gel. Why is nothing helping. I cried my eyes out at the doctors and asked her to refer me to a psychiatrist because there is no way that this pain can be real. But she said there it is a real condition involving the sacroilic joint that causes this pain and the rheumatologist will be able to help. Its reasuing in some ways to know that the doctor believes me.

Me and my husband are argueing consantly because of this but I cant help letting it get to me. I have given birth naturaly with no pain relief and coped better than this.

traluvie

KittyKate..

I read your story and can really feel your pain... you will be surprised with how many ppl can sympathise with what you say.. I know the pain can be unbearable at times.. i had a bout last week where i was crying with the pain that was in my wrist and fingers and ankles too i really didn't know what to do with myself.. my partner run a hot bath with radox.. although it didn't take the pain away the hot water made me relax and calmed me down enough for me to recompose and start again.. it can be a real struggle at times.. an although my partner is a great support we sometimes argue and i hate feeling so helpless and useless at times.. this can add to the already added pressures you are feeling..
I can not advise on how you can cope as everyone has different techniques that work for them.. my children are normally the ones that refocus my attention from my pains and a few hot baths a day lol...
Maybe go and see your gp again to talk about stronger meds.. dyhydrocodeine are strong but can make you feel very spaced out thats why i take tramadol and diclofenac and have had steroid injection too which has helped alot..
I hope you find some comfort soon..
Feel free to rant anytime..

Tracy

tjt6768

Hi KK, so sorry that you are suffering like this...
I know it won't do too much bit when I get sciatica, the pains down the bum cheek and leg, I was taught by the physio to do extensions, basically a press up but everything from the waist/hips down stays flat to the floor/surface... Push as high as you can ans hold for a couple of seconds.. I hope I am not doing the wrong thing suggesting this as I know we're all different, but sciatica is what that part sounds like to me.. If you are unsure then please don't try it, it does help mine some though...

Really hope it eases for you and soon.. You need to be asking to see a pain specialist maybe, or chase up the Rheumy appointment, tell them you will take a cancellation if there are any..

dreamdaisy

Labour pains come to an end, go, and stay gone. Arthritis pains never come to an end, never go, and stay forever. I wonder if you have a trapped nerve? I am not a doc and I don't know your circumstances/history but trapped nerves can certainly cause agony. Both my sacro-iliac joints hurt, constantly, but I don't get the shooting pains down my leg/s. Perhaps it's disc trouble with your lower back - I really don't know but there is obviously something not right. I hope you can find an answer. DD

frogmorton

Hi Kittykate

I am so sorry you are in so much pain. Backs can be vile as they are kind of in the middle of you aren't they?

They believe you now and will help so all you have to do is survive until then.

I have had back surgery myself and know what pain you are in ( I think), for now i think you need to look at getting as comfortable as you can. Think of things like putting pillows between your knees and using heat packs on your back.

Have you thought about things like the slow release tramadol or pain patches to give you the meds constantly rather than in bursts, which wear off? Are you on any muscle relaxants such as diazepam ot amitriptyline at night? they can stop the back 'spasming' and making the pain worse.

Thing with pain is to 'get ahead' of it if you can and stay there. Does that make sense??

You are doing all the right things to try to distract yourself - keep doing them, but beleive that you DO have light at the end of the tunnel.

LOve

Toni xx

lindalegs

Hi Kittykate,

I'm so sorry that you're in so much pain at the moment and my experience of arthritic pain is that is does get better. I've had aggressive RA for 24 years. We have spells when it seems unbearable but they do pass. Drug control is the biggest thing to help and I feel you're probably not on the correct medication. I was told there's a whole mountain of drugs, so there has to be one that suits you better.

Ring your GP tomorrow, make an appointment or get a home visit and tell them how you are. You need help now and can't wait till 24th, whilst you remain quiet your doc thinks you're fine.

Do ring.

speedalong

Hi Kittykate,

being taken over by pain is awful and even worse at night. The anxiety and tension that this causes makes you feel even works.

As Frogmorton says, there are other meds you could try whilst you wait for the appointment on the 24th - worth going back to GP, in the meantime take the meds you have as regular as clock work - so they get in your system and help dull the pain a little.

DD is right too and though it is very hard to distract yourself from it - this is something you really need to try and do - that is why pain seems worse at night - because you are lying in bed and undistracted.

Experiment with heat and cold pads too and soaks in the bath.

HOpe you feel some relief soon, relentless pain takes its toll.

Speedy

puffin

Hi kittykate,

I think I have some idea of what you are experiencing as many years ago I had excruciating back pain, sacro-iliac joint pain and numb leg. I won't go into my history here, but as I can get repeats of this pain and numbness I will mention that years ago I was put on complete bed rest in hospital and told I 'could get back into alignment'.
This kind of bed rest is far from easy at home because there is the toileting situation. With an extremely supportive partner and a bedpan it might be possible!
The idea is that with virtually all pressure relieved in the spine, the spaces between the vertebrae open up ( just fractionally of course) and the discs, joints and nerves are freed of pressure.
Unfortunately with the bed rest comes a weakening of the back muscles --that is why prolonged bed rest is not recommended by some doctors.
It turned out I had several sites with prolapsed discs. The pain was horrendous. One day, lying flat, I turned over to speak to visitors and in doing so turned my pelvis. A new sharp pain resulted then disappeared. I learned that this was part of the disc in the lumbar area going back into place--or being reabsorbed.
I still dislocate regularly but have learned how I can deal with it.
What to do in your situation?
Try lying on the floor (rug/carpet necessary!) with your legs over a stool or several cushions/pillows. A stool is better but it has to be a certain height----your thighs should be at right angles or nearly at right angles to your back, your calves resting on the stool. This is not easy--it takes a bit of practice. If it is too hard then lie flat on your bed with your legs supported by cushions as has been suggested. Rest as much as you can. Hopefully this will in time release what may be a trapped nerve.
Also drink water regularly---you need the fluid. Keep taking the painkillers.
Meantime agitate for X-rays. You may need different kinds as ordinary ones do not show up soft tissue.
Perhaps someone could post on your behalf to keep us updated.
Hang in there!
Best wishes,
Puffin.

sunnyhours

I can sympathize with you as I am in a very similar place right now, my lower back and my knees are killing me and my doc says it's all in my head...
DD is right by saying that focusing on something else helps tremendously, I guess that's why I'm such a couch potato now :P
Also you can try ice packs to freeze the pain. You're lucky you foud a doctor that believes you.
I hope the pain subsides soon

julie47

Hi kittykate
Just sending you gentle hugs((((())))) I am so sorry that you are in so much pain at the moment. I am sure when your meds are sorted you will start to feel much better. I have my finger crossed for you.
Take care
Juliepf x

spacey

hi KittyKate
you have my sympathy. On new years eve it was confirmed that my back pain is arthritis in my sacral joints and I can confirm it is painful! I have found amitriptyline at night and regular volterol has taken the edge off the pain. I too have nerve involvement as the inflamation is squishing the sciatic nerve. I have too young children who are a fantastic distraction because they never stop and dont understand that mummy hurts so I have to carry on which I think is a god send. Moving around and gently excersising help with my stiffness and the physios excersises are also benefiting me. I really hope that you get the help you need. I know that it can be a long process but please try to remain positive x

frogmorton

Hi Kittykate

Just wondering how you are doing today?

Any better at alol?

I hope our support is helping you even just a little.

Love

Toni xx

dreamdaisy

Hi KittyKate, I hope things have eased a little for you. DD

creekymum

Hi Kitty

I'm so sorry you are feeling so bad.I'm new here but experiencing similar symptoms.As you will read from my Hello post I too was diagnosed 12 years ago with dysfunctional pelvis after child birth.
Recently I've got lots worse to the point that I am only sleeping for 4 or 5 hours per night.
One tip that I found helpful is SOFT seats, Rolling myself in goose down duvets and padding myself with anything soft that I can find.
If I try sitting on hard seats I get stuck and spend a while trying to straighten up.
I was diagnosed with OA in my lumbar spine after an xray last week now awaiting an orthopaedic appointment.
If you need someone to chat to feel free to message me.
Take Care
Lisa

skezier

Hi Lisa,

Welcome flower and nice to meet you. Cris x

Hi KittyKat,

Its no easy is it? I spend half the night awake and half the morning half asleep now.... I can't turn over and yet asleep I haven't got the sense not to try and ed up on the back which is a pet hate of both the lumber and the neck.

I don't know what to suggest cus well I have the same problem at night and haven't found a way round it yet but I do think you need either an add in or change of tablets.....

Sometimes that helps.

Hope you are getting a better night and see what the doc says cus I honestly do think different tablets might be a help yo you. Hang in thee flower. Cris x