long term pain relief

[miley0710]

Hello, I am new to this forum but not new to pain and its problems unfortunately. I was diagnosed with Ankylosing Spondilitis 30 years ago whilst 3months pregnant. The main symptom was Iritis and low back pain. The years passed however with a gradual changing of my joints. I managed AS taking little or no pain relief, just keeping moving with a young family to care for and my job. I am now 57 and have been under the care of various rheumatologists who have referred me for scans etc ( which showed L5 nerve root compression) no meds given. A new rheumatologist last year diagnosed osteoarthritis in my hands and feet. For the past 3 months though which is my main reason for posting on this site I have been troubled with sciatica, don't know if the cause is pressure on the nerve from my back or SI joints. I am worn out with this constant pain /numbness /pins and needles in my left leg. I have tried Ibruprofen, gabapentin and naproxen, only on amytriptalene at night now, been to physio, got the usual exercise sheet. Cant sit, cant stand, cant walk very far because my feet ache.I am wondering if anyone here is suffering in a similar way and would be grateful for any input.

[Zedman]

So sad and sorry to hear of your pains miley0710. It’s amazing how you have managed for such a long time. I hope/wish/pray you find comfort somehow. Wish I could offer more😣

[041051]

Hello, I have similar problems and I have recently started to have really painful feet. I do have lipo/lymphoedema as well and that doesn't help. I ditched all of my pain medications some years ago and I just use a Fentanyl patch now. It has worked for me to a certain extent and on bad days I take paracetamol. I could increase my Fentanyl but that makes me sleepy and also, I don't want to become addicted so I tend to leave it off over the weekend. My surgery know this and usually no one bothers about it. I hope you can get some relief soon

[Casperam]

Hi Milo I’m so sorry your in so much pain. I also have sciatica, spondylitis. I’ve had two MRI’s first one they said it was nipping second said it’s now splurged out ( not very technical from doc)

[Casperam in reply to Casperam]

Sorry couldn’t get message out. I’m on gabapentin amytriptalene tramadol and Celebrex but still can’t walk or sit for long. Would love any help/advice. Going to pain clinic which is great but they want me to manage my pain where I want relief x

[Krawlins]

Hi Miley

I feel like you sound without the diagnosis of AS nor any help from rheumatology. I have recurring bulging disc at l5s1 after having emergency surgery, discectomy/laminectomy in 2012. It recurred a year later and I've been suffering ever since with low back pain, muscular pain in buttocks a and thighs, hip/pelvic pain and leg, knee and foot pain, I'm 57 on amitriptyline and have tried naproxen, gabapentin and pregabalin. I'm riddled with arthritis, though rheumatology announced they wouldn't see me anymore once they'd seen my MRI and referred me to orthopedics. I'm also under pain management but no follow up in 6 months since the last epidural nerve block d facet joint injections despite saying they'd call at 6 weeks! Yes experts try and help but nothing shows physically outward, no real limp or unusual gait, though I find it hart to walk in a straight line nowadays. I sit at work for many hours despite getting up for the loo frequently and having a standing desk that goes up and down as I choose, I still find it so painful to walk when I leave the office. When I read about AS I feel I may have it and I read the advice was to go for a brisk 5 min walk every 30m if you're sitting for long periods, I can see his helping me if work will allow.

I was meant to be having fusion, the l5s1 is almost certainly the cause of your sciatica, it is for me but it felt like the consultant was changing his mind at my appt last week so instead he's doing a foraminal injection which is diagnostic it won't give long term pain relief but if I get any pain relief then I might be a candidate for it, its such major surgery so I want to be sure as well. I want to feel better and able to help out when my son and daughter give me grandchildren, my granddaughtes from eldest son are 8 and 5 so bit easier for me now but when they were babies boy was it difficult for me with my back, I don't want that again.

I'm doing physio for back/core strength and hip and left leg strengthening as still my weak one.

I hope maybe some info here might help you and we'll both be more pain free in the future.

Kay

[freemanboats003]

I have been in constant pain 24x7 for 46 years, I'm 51 now, the last 20 years its been severe pain. I was born with Ehlers Danlos Syndrome Classical Type (EDS) although it wasn't until I was 39yrs that I finally had a diagnosis as I was adopted and family history is key to the diagnosis. I developed Compmex Regional Pain Syndrome (CRPS), the latter is the most painful condition known to doctors beating both amputation & childbirth, the slightest touch can feel like the worst pain possible. I first got CRPS over a decade ago following a serious infection that resulted in 4 months in hospital & 5 operations, I'm very lucky to still have my left leg & my life. I also developed Hypersomnia żThe daily recurrent dislocations/sublaxations I get with EDS have caused terrible damage to my joints but I can't have joint replacements. The nightly dislocations of my hips in my sleep or when I wake up with both hips in a stress position & if I don't move the right way in thise first few seconds of waking they dislocate. As my hip has gone back in it's pinched / compressed the sciatic nerve and for the past 5 years I've had sciatica which I've been successfully treating with Gabapentin, it doesn't take all the sciatic pain away but greatly reduces it.

I take what woukd be considered very high dosages if Zomorph (slow relief morphine- 600mg every 12 hrs) plus Sevredol (morphine) upto 260mg/day for breakthrough pain & that doesn't do anything for rhe sciatica. Between 2002 -2011 My pain was completely out of control, I was a FT wheelchair user & FT carer as I was in a really bad place with bone & nerve pain. I lost my job and all the things I loved to do, which led to clinical depression. My Pain comsultant & pain management team at West Suffolk Hospital are brilliant & its how I learnt how wonderful Gabapentin can be if used correctly & at right dosage, I'm currently taking 900-1200mg /day but during those bad years my dosage was 2400mg/day plus duloxetine 90mg I was also taking 160mg/Day Methadone & 300mg /Day Morphine.

Currently I get the sciatica pain in my lower back, down my right leg.

My feet are permanently swollen (CRPS) & my shoe size has gone up from 9 to 11.5

My right knee has so much damage, I haven't beeen able to bend it for last 2 yrs, if I sit with it bent for more than a few mins on a bus/train the pain increases to a level that I struggle to deal with. The back of the patella is worn away, my cartilage is torn & I have a hard lump above my patella.

I use meditation and relaxation pain management techniques as part of my pain management. I concentrate on the things I can do and not the things I can no longer do. I stay away from support groups & I try to do things or be involved with positive people& stay away from negative ones.

Despite the above I am able to have a good quality of life, if you met me you would never guess the level of pain I'm in daily. I rarely use my crutches and I never use my wheelchair. I try to walk as much as I can, sometimes the pain is so intense I can't or I have to go for a coffee until it subsides enough. My pain management is a FT job, its not easy but it's definitely worth it. The EDS affects every joint in my body, the last conservative estimate is that I've dislocated/sublaxed my right knee over 30,000 times, in my 20's I was averaging 18-20 fuull/partial dislocations a day, I've now reduced that to less than 3 per day.

Meditation including visualisation techniques, Pacing and exercise have made the biggest difference to my pain levels and life. These form the backbone of my daily pain management regime. But whenever I exercise I have to take morphine to but it does help reduce the pain but it can take upto 12 months before I see any improvement, there are no quick results!. Pacing is boring & I hate not beong spontaneous but it really works, the ability to do the same task for 10 mins each day. I've learnt some breathing meditatiins that I can use whenever/wherever I need them, they can instantly lower my pain levels until my pain relief can kick in. I've also had some success with Lindocaine patches.

Every Physio I've ever seen has made my pain worst, EDS means my joints don't behave like normal people's but not all Physio's will listen whilst others have told me they know all about EDS but clearly don't. I stay away from Physio's now.

Doctors/Physio's are trained that when they hear hoofbeats they think horses (99.9%)but I'm a Zebra (0.1%).

When i first start taking Gabapentin, it can take a month to get to an optimum dosage and another month, sometimes two to build up in my system before J see results. I've had some sucess with a TSE machine that my Pain management Clinic lent me, it goes deeper than TENS & the effects can last longer. Unfortunately there aren't many real Pain Clincs in the uk see pain society website for a list, others call themselves pain clinics but are staffed by doctors who have an interest in pain, in my experience of over 40 yrs of pain management that it makes a huge difference. It was only when I went to my current clinic who is staffed by FT pain consultants, Dr Munglani who I see is one of the leading Pain consultants & people have flown in from the USA just to see him because their doctors have told them he was the best person to see.

Chronic Fatigue is a part of EDS & it causes brain fog so hope the above makes sense, let me know if you have any questions.

I hurt lime hell all the time, horrific is the only word that comes close to describing what it feels like. I have to force myself to walk when my feet are really painful, sometimes thats just so i can go for a coffee on the bus (had my driving licence taken off me as take too much morphine) but doing nothing means I'll feel more pain & feel worst in myself.

It's a medical fact that mood affects how we feel pain, when we're happy we feel less pain than when we're sad.

Please let me know if you have any questions etc.

Bestb wishes,

David

[FolkSing]

Thanks for your post. I’m new to this site. I suffer from Allodynia triggered by different types of clothing. I just wanted to ask, what is “FT”?

Best wishes

Eleanor