AS sufferer

[Ingy50]

I am now 74 years but had AS since I was four years of age and is now disintegrated many of my discs now have constant trembling 24/7 and the pain is getting unbearable to the point. I have seriously thought I would be better off not being here. I am on morphine and pregabalin and of course paracetamol amongst other drugs. I have got to the point now where I feel claustrophobic with the pain. I just cannot escape from it. I wake up in the night having a panic attack with the pain. I have pains in my hips in my buttocks and my muscles in my arms and my legs and my hands, are 60% less than what they were. Any advice would be more than welcome as I feel undoing my mind with the pain. Regards Ingy50

[FRreedman]

Have you asked your doctor about possibly altering your medication to swap some of the Morphine for a nerve blocker or Nortriptyline or a similar simple swap. This may allow your pain receptors some relief as they accommodate the different medication. In the meantime I wish you good luck and keep well.

[Ingy50 in reply to FRreedman]

No I haven’t been told anything about that but will certainly check it out with the doctor, many thanks.

[Delboy1]

Hi Inhy50,

Sorry to hear your in so much pain. You sound like your describing my body!

I have gone through what you are going through right now. I had a miracle machine inserted in my stomach. What this does is pumps Hydramorphine into a catheter in the back which drips into the Spinal column.

The machine is called a Medtronic pump which has done wonders for me as I have degerate disc syndrome which causes all the discs to crumble away. I hope this helps you. At least Look into it.

Kind regards

Derek 70yrs young

[Ingy50 in reply to Delboy1]

Many thanks for the info I will definitely check it out

[Marylyn]

I suggest you ask your Dr to exclude a vitB12 ,vit D ,folate & magnesium deficiency.I was diagnosed finally 11 yrs ago.I was prescribed weekly methyl b12 injections,& those supplements which I believed prevented chronic nerve & muscle pain.I have hearing loss & severe cervical & multilevel spinal stenosis thanks to delayed diagnosis’ & treatment.Tragically in our present times the covid experiment is escalating these deficiencies .

[Ingy50 in reply to Marylyn]

Many thanks for your kind comments I will certainly look into this. Thanks

[PainConcernProjects Partner Community Champion Pain Concern]

Hello Ingy50,

Sorry you are experiencing high levels of pain. I noticed you mentioned you are on various pain medications. Have you recently had a medication review with your GP / other medical professional? I just wanted to check that they are aware of your current situation.

You may like to look at your 'manage your pain' leaflet painconcern.org.uk/product/... or sign up to one of our online Pain Education sessions, which aim to help people with better understanding and managing their pain. The session can be booked here: ow.ly/ZlgZ50SUsrj

-Pain Concern UK

[Ingy50 in reply to PainConcernProjects]

I have been for a review with Drs but recently had to change practice because of my move and the new Drs are sending me for an update MRI plus increased my Pregabalin but god knows how long before the scan with the state the NHS is in then waiting for results however many thanks for your advice I will look into it.

[PainConcernProjects Partner Community Champion Pain Concern]

You're welcome. That sounds positive steps that they've referred you for another MRI, although I understand your concerns about waiting times. I hope you don't have too long a wait and are able to find some ways to help with the pain in the mean time.

You may also find our self navigator tool helpful for future medical consultations painconcern.org.uk/the-navi...

[Victoria70222]

Sorry to hear all your problems, mine are small compared to yours. I have been on Pregabaline for about 2 years now, just increased t 50mg morning and night for Trigeminal Neuralgia very different to your problem, if it means you take less Morphine it is worth a try if your Dr. suggests it. Good luck, I hope it helps.

[Ingy50 in reply to Victoria70222]

I’m on 300 Pregabalin morning and same at night also a fair amount of morphine day and night and have been for 20+ years but the trouble is your body gets used to them and you’re tempted to take more at one time I was on liquid morphine and diazepam as well but dropped those a while back sometimes I think paracetamol is as good or better than the others.

[Southerngirl2787]

You have dealt with this a long time, I am so sorry you are in so much pain. Prayers for relief for you. I have AS as well, only diagnosed a couple of years ago, I'm 63 now, with Lupus as well. This is a mean-spirited condition. I walk as much as possible, the last couple of weeks, that's been inside only with hiking poles. 15 surgeries in the last few years, and more to come soon. Constant nerve impingements, bone spurs. I also find eating no sugars, no grains, no starches and no seed oils keeps inflammation down...my Rheumy is always happy with labs. At the least, no sugars no seed oils, two biggest inflammation foods out there. I'm allergic to anti-seizure meds, tried Gabapentin, not good.

[Ingy50 in reply to Southerngirl2787]

AS is a real bitch it cost me a wonderful 20 yr relationship but in the end because I became more disabled she couldn’t hack it and I was surplus to requirements. I had sepsis one day and next thing I knew I’ve been three days in intensive care had no knowledge of feeling ill but it was just the last straw for her, I can understand where she’s coming from although I don’t agree with the way that she did it but whilst I was in hospital I was then made homeless and had to be put into a nursing home to recover lost all the things I love including her, but that’s life but it does you at times . Many thanks for your input. I also was on gabapentin and they changed it to pregabalin for some reason I’ve had to change doctors because the previous one would take on average six weeks for a telephone consultation or a face-to-face and I find that totally unacceptable especially when you’re on serious medication and in chronic pain 24 seven the NHS has really gone down the pan anyway hoping my new doctors will be better as I asked them what the appointment time is and they said usually 3 to 4 days which is a big improvement on the old one .

[Southerngirl2787 in reply to Ingy50]

It's not much better here in the States...takes a while to get an appointment. The use of messaging has helped, now there are these folks that we can "hire" with Medicare coverage to help manage everything, but at a monthly cost of $125. How awful to find yourself out of your home, all for going in the hospital....which is one of the worst places to be these days!

[Ingy50 in reply to Southerngirl2787]

Well to be honest with you she also had her problems which were on the depressive side put it like that and I just don’t think she could cope with anything like that anymore which I do understand as I said before but it was the wrong way that she did it The strange thing is when I was intensive care she came to see me twice not in the chatty way, but then after that, I was banned from going back there crazy but as I said she has her own problems to deal with and it’s best that I leave it that way with her , I’ve got enough of my own as you know with it’s very difficult mine started when I was about four and then I had several respite periods during my life but each back worse and then when I reached 50+ it came back with vengeance are used to be a rock drummer in bands and session work and also tuition and I managed to keep going until I was about 62 but after that I couldn’t even stay sitting on the stool for long and the nerve pain are dreadful and I have growth on my spine as well which are impinging on the central nerve. I’m 74 now and I have some help with. I can’t see me wanting to be 80 and having that pain all the time only getting worse I know this sounds a bit like a poor me , it’s just the way that gets you absolutely saps all your energy your physical energy and certainly your mental energy . i’ve been told mine is inoperable and furthermore I have two fractures in my spine due to osteoporosis.

cheers once again..

[Southerngirl2787]

I agree with your spirit and attitude. It takes a toll on us, and we have to get through that and sometimes there's no putting others ahead of us that day. 80 seems a long way off...I must be in a bad times period, I know I've had it for decades, just not diagnosed. The nerve impingements are the worst thing...you are right, saps the body and mind. I'm lucky my neurosurgeon can go in and do a bit to keep me going, keep me upright and walking. But so many surgeries wears you out as well. But this is our path in life, we will keep going as best we can. There's no poor me here, just friends that understand!

[Ingy50 in reply to Southerngirl2787]

Many thanks for those kind words and sorry about some of the texting. I was doing it by voice and predictive text has a mind of its own cheers for now.