Where to go from here?

19smp59

I've found this forum really helpful over the last few months and I can see that there are a lot of people putting up with a lot of pain and disability but I'm a bit unsure sometimes about just putting up with things or whether I should be pushing for something else.

I have a diagnosis of generalised osteoarthritis, probably related to suffering from Hypermobility Syndrome. I was recently referred to a Neurosurgeon as I have severe degeneration in my cervical spine at multiple levels together with stenosis in the spinal canal and exit foraminal stenosis. I have just heard back from the Neurosurgeon that luckily my spinal cord is not damaged and that I need to continue with pain medication. My MRI scan also showed chronic degeneration in the theracic spine and lumber spine but without stenosis.

The last thing I wanted was an operation so I am pleased with the outcome, although a little angry about the rest of the results as I was once told that the pain I had in the middle of my back was due to the way I was sitting.

I am really struggling with sleep as I can't sleep on my back as it is too painful and it makes my arms go numb and painful but I now also can't sleep on my sides as my hips become really painful due to arthritis in both of them. When I last approached my GP with regard to this I was told to take paracetamol at night on top of the Tramadol.

I am due to see my GP this week to discuss my results but I am unsure as to whether it is just a case of putting up with things or is there anything else I should be asking for? I get the feeling that my GP just thinks the arthritis in my spine is simply part of getting older and not much of a problem.

I am 53 and I work full-time which is a real struggle and I perfectly understand that doctors aren't miracle workers and that sometimes it's a case of just getting on with things.

Sorry this is a bit long-winded but any advice would be appreciated.

Suzanne

mrskayh

Hi, im so sorry ur in so much pain,but great newson the spinal cord i am new to arthritis and the forum so not sure im overly helpful, except have u got or tried a body pillow, i discovered them when i was pregnant (bought it out the maternity section of argos) but i found that using that when sleeping on my sides supports my hips and i get less pain. Not sure if thats helpful to you or not. Good luck. Xx

hileena111

Hi Welcome to the forum
Ostoarthritis...well that is usually handled by the GP until it comes to the time to have surgery.....There's not a lot {that I have found} that helps.

I have OA in my hips, ankles, lower spine {or it was lower could be more now} and neck. I have kyphoscoliosis and spinal stenosis as well.
I've had one hip replacement and they are talking about doing the other one now. I was at the pain clinic last week and he said well at least that would be one less thing to cope with since there wasn't anything that could be done for my back....an operation was out of the question...{like you I'm glad...certainly don't want an op on my back }

I'm on paracetamol 2 x 4tims a a day.
Also naproxen.
Nothing else for pain....just the usual lansoprozol for stomach etc
I find heat helps me {wheat bag that goes in the microwave} Some people think a TENS machine is good....personally I don't find it good but everone is different.
Before you see your GP....sit down and make a note...of all the things you have told us and anything else you want to ask him.....It's so easy to forget to ask certain things when you get there...be it a GP or a consultant :oops:
Do you use any walking aids? I have got a mixture of things and use them depending where I'm going and how I feel at that time.
Come back on and talk....The weekends are quite but I'm sure you'll get plenty of advice and some of it you might be able to try

Love
Hileena

frogmorton

Hi there - some great advice there already

The bodypillows CAN help can't they Kay - I got my Ex MIL one for her fibro and she loves it.

I make do with a pillow between my knees so I can stop the 'twisting' which happens naturally and might be causing the numbness by trapping nerves maybe???

I also take 25mg amitriptyline at night which helps as LOT for sleep and muscles relax too.

Hileena is right. Do a clear succinct list. Where the pain is when and how much out of 10 it is. Makes sure he knows you work too.

Do you take an anti-inflammatory too with your tramadols? Like diclofenic, ibuprofen etc? And are the tramadols slow release??? That can help by keeping pain levels down long enough to enable sleep.

Some folks have steroid jabs in various bits of the back to help. For some it's fantastic:) There is also physio which could be tried and finally pain clinics if there is one by you?

Take care now

Love

Toni xxx

19smp59

Thanks for some really helpful advice. MrsKayH - this sounds good I shall investigate! I have this week purchased a really thick foam mattress topper which makes my bed feel much more comfortable but hasn't helped with the hip pain. I don't use any walking aids, I am stiff and sore in the day but definitely not at the stage of needing any aids, the pain in my hips is just much worse at night as soon as I put any pressure on them.

My intention when I went to my GP was to ask for a referral to a Pain Management Clinic at North Manchester General Hospital as I have heard their clinic is very good. I have in the past been to a more local one but didn't get much from it. It was my GP who advised seeing the Neurosurgeon first just to make sure the stenosis hadn't got worse. I have been seeing a lady GP and not my own GP who I often feel doesn't take things seriously enough.

I take Tramadol 50mg tabs, 2 tabs three or four times a day and Amitriptyline 20mg at night. I have to say the Amitriptyline has helped with sleeping. I have also started to make myself go for walks at night as I was getting into the habit of coming home from work, tea, bath, bed and this isn't good for anyone.

I shall now pursue the pain clinic referral as I would like to try a 'block' in my cervical spine.

It is obvious from reading posts on here that people are putting up with much worse, I think the thing with pain is that every so often it gets to you and drags you down, but I always tell myself that things could be much worse and luckily my manager at work is good for letting me work flexibly, so on good days I work longer hours so that when I feel rubbish I can use the time I've made to have a day off. Just have to hope with all the cuts I keep my job (Local Government)!

Gosh, I am rambling on a bit - thanks again for great advice.

Suzanne x

19smp59

Ah, just seen the bit about slow release Tramadol - I shall ask about that when I see GP. I don't take anti-inflammatories, they always give me indigestion even though I take Omeprazole.

mrskayh

Your welcome, hope it can offer u some relief. I find using it to prop up my hip im on and then between my legs it keeps the hips open abd reduces my pain. I see are near me (i live in manchester area too!) How are you finding getting treatment in the area? Im new from the north east.
Lv Kay.x

hileena111

Hi
That's good that you don't need any walking aids....but if you ever do....don't let pride stop you.....it's not giving in....its a coping mechanism...its the same as meds....... keep on top of the pain.
You've got loads of suggestions from others about sleeping....I haven't managed to figure out how to sleep without pain :roll:
As for others putting up with more pain......pain is pain is pain!!!!!!! It really can drag you down at times
Good luck with your search and let us know how it goes.
Kay was it you said you had just moved to Manchester from the N.E.?
Howe did you find them? I am treated by Northumberland and find them good.

Love
Hileena

mrskayh

yes it was me
I have only just went to the gp about my joints so never had any treatments yet. I lived inberwick upon tweed before we moved, and the treatments / services there werent too good, but my gyne was in the rvi and i cant fault tht place

Kay.xx

hileena111

Hi Kay
Hope you settle in Manchester......I've had nothing to do with the RVI except a broken ankle :roll:

Love
Hileena

19smp59

Hi Kay

I live between Bury and Bolton, so yes near Manchester. I've not really been happy with services to be honest. I was a few years ago sent for a musculoskeletal assessment which was awful. Everything I said was dismissed. I was told I couldn't have xray of neck because no radiologist would agree to it! Told pain in middle back probably due to the way I was sitting and told I had moderate arthritis in just one hip, despite me asking if it was in both (which I found out later it is). I honestly would never go back there. I had facet joint injections at Fairfield Hospital in Bury and the consultant only did one side because his own neck was painful and he couldn't lean over for too long! I have heard that the pain clinic at NMGH in Crumpsall is very good and I am hoping to get a referral there.

What part of Manchester are you living in?

Suzanne x

mrskayh

Oh not good, im living in Eccles, moved here in april. X

19smp59

Hi Kay

You are near Salford Royal, I believe their Pain Clinic is very good.

Suzanne x

bubbadog

Hi Suzanne, I suffer with broken sleep due to the pain in my hips and back, I automatically go into fetal position so it wakes me up with the pain. So I have to try and get into a comfortable position again and try and drop off. I'm also on Amitriptyline tablets! You need to have a sit down with your G.P and explain everything to them about your lack of sleep and the pain that causes it because only then can they look into other possible routes to help maybe a pain clinic or something else. There's always another door to try when it comes to pain! They never give up hope!!