Can't stand the pain much longer

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Hi. I am new to this forum I am 68 but started spondylitis when I was about 4/5yrs and got worse over the years and now I have it severe in L1 to L5 in my spine which is inoperable and even physiotherapist say they can't help me as it is so bad I am now completely disabled and while the condition is unbearable and many times I feel I just can't tolerate it much more what I find even more painful is the horrendous  spasms which makes it very hard to breath, I am on heavy amount of morphine /pregabalin/diazepam and have be recommended medical cannabis especially as it is soon going to be legal in uk . Any advice/comments would be most welcome  many thanks in advanced,

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  • Posted

    Wow. My AS started at 26. Now 62. Morphine didn't work for me. Caused memory issues. My AS staying in sacral joints. Left partially fused. Back and mostly neck has osteoarthritis. On Cosentyx (2week). Not sure what arthritis drugs you're taking. Had a issue with breathing and Dr gave script for Fentanyl (50 patch) and lungs got better. Did this treatment for six weeks and lungs still in good shape, was weaned off Fentanyl. Think biologics I've been on has kept AS from moving into discs. Developed Melanoma while on Humira that's why Dr started me on Cosentyx. Don't give up. Hope pain becomes tolerable.

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  • Posted

    Hi ingy, I'm so sorry for your situation and you are on the right track with the medication. I got to the stage last week that I couldn't take any more so I was given a pain patch and was so amazed at the difference. It made me a little dizzy at first but then it worked so well without any further side affects. I think it's called Fentanyl. How wonderful it was to be pain free even just for the 72 hours it lasted. I wonder if any other patients have tried this, how much it costs and how effective it has been for others. I totally agree with the use of medical cannabis and wish it was legal here. But I live in Indonesia and I guess it never will be legal here. I tried it when I was in Australia and it worked wonders. But since then Fentanyl is the only thing that worked for me almost instantly. I do hope you find help and get pain free or enough to continue life in some sort of normality. Hugs..G

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    • Posted

      Hi Gloria, in my post I stated on Fentanyl. Also called Duragesic. I started at 25mcg which only gave mild relief and breathing assistance. Then went to 50mcg patch. Worked great. I'm in Indiana, USA and the drug is relatively cheap in generic. The laws are cracking down on opioid in US due to abuse and overdose. Medical Cannabis I believe would bring relief to Chronic Pain sufferers. I hope it gets approved and regulated. to have stable product. Hope pain improves. A DMARD or Biologic AS drug can help maybe with remission. Hope you have access to same

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  • Posted

    Hi Ingy,  sounds like you’re going through a rough time. I hope it lets up soon. 

    I noticed you listed morphine, pregabalin and diazepam...  Do you take more meds?  Those three don’t help inflammation, which is usually the root of an AS flare and daily pain.  Meds a rheumatologist might prescribe for inflammation control are biologics, methotrexate, sulfasalizine, or NSAIDS.

    I have those horrible little spasms in my spine, especially overnight and terrible pain in the morning. I’ve been taking muscle relaxers at night for the spasms. Works wonders. They help me fall asleep, stay asleep, and the spasms are virtually gone.  

    There are many things for pain management. I take several meds, watch my stress levels, eat an anti-inflammatory diet and try like heck to keep moving. Right now I’m taking an NSAIDS, Effexor XR (blocks pain receptors in brain), muscle relaxer, an opioid, lidocaine patches 5%, and Voltaren gel. I have also had good luck with a good Tumeric root supplement.

    Also helpful are music and laughter. And my big, dumb dog! 🐶 

    Just an side comment:  I took diazepam for a number of years. I later learned it’s only helpful at the beginning and long term use is not beneficial. I tapered off very quickly with no problems. I now take Vistaril.  It works great for my anxiety without the extra fatigue. It was originally used just as an allergy medicine- so I get a little bonus with my allergies

    Keep hanging in there!!  I’m hoping your pain will die down soon. I’ve had AS nearly 50 years and the pain the last 2-3 years has been worse than ever.  We deserve more good days!  I hope yours come quickly!!!

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    • Posted

      Sorry I forgot to mention that I am also on anti-inflammatory drugs ( one tends to take so many you forget them all) . I have doubts about getting easier ( I can't even walk unaided to the kitchen and make a cup of tea then if I do I spill most of it because my whole body shakes with pain by the time I get back to the room I came from)  although a friend of mine gave me a try of medical cannabis and that really helped more than all the other drugs put together so I can't wait for it to be legal in UK later this year. I also use a vape pen with very strong CBD and that also helps but leaves me with a very dry mouth also at the strength I use is VERY expensive (£150 for 10mls !!) and that lasts 2 weeks.

      Many thanks to my reply 

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    • Posted

      I also forgot to mention in my first posting that the damage to my spine has left me with complete numbness in both feet and now going up my legs and when I say numbness I mean I can't feel my feet at all to the point you could stick a knife in the and I wouldn't, in face when one of my dogs was a puppy she was biting my feet and I didn't know until my wife saw it and stopped it happening any more cheesygrineeksad

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    • Posted

      Wow!  I sure am glad she was there to take care of the puppy!!

      I have had numbness in my legs for yours, but not my feet. Over the past 3 years the AS really attacked them both with swelling and pain. Not at all fun. 

      I hope I can offer a helpful suggestion for your tea.  I share your experience!   Today I only use cups with tight fitting lids that close on top (no open sip holes). Most of my cups are travel cups, some are just novelty cups that meet my needs.  It’s a little change that works for me.  

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    • Posted

      Hi, I too have the numbness you have in my legs right up to the groin and my toes too. The toes sometimes go discolored like bruises too. They are cold to the touch and my specialist says it's due to lack of circulation or could be vascular ( veins). I think it is nerve damage as I have ten vertebra affected by A.S. I get tingling in my fingers too and pain down my arms due to nerve damage in my neck and spinal cord stenosis. My cat who usually keeps me company in my bed jumped on my legs this morning, I could have strangled her, well not really but I was hopping mad ( if I could hop that is ) The pain was horrible and still hurts now. I am waiting to start Fentanyl patches but here they are very expensive. So I don't know if I can afford them for very long. I wish you well my friend, keep trying whatever you can to relieve then pain, I'm a great believer in if it feels good, do it. Hugs to you. G

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    • Posted

      Hey! Here in Indiana fentanyl going for $53 for 50mcg. As you know usually comes with 5 patches. That's 15 days of coverage. It all adds up. That's cash price via RX list at Kroger pharmacy. I'm blessed have rx coverage with co-pays. Fentanyl got me going then was able switch to lesser opioid. I had problems with patches falling off. Luckily my dog didn't bother them. I reported to FDA I was concerned bout children chewing on them. Im wondering what AS meds you're on such as DMARDS or biologics. Take care.

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    • Posted

      Hi Gary,

      I have similar problems getting my Lidocaine patches to stay on. My my lower back, I wear a tight fitting tank over the patches, tucked in securely.   Then I put a loose shirt over the tank, untucked.  I do something similar on other large areas.  Compression  garments also work well. Also, I’ve used  ACE bandages on my knees. Hope this helps. 

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    • Posted

      Thanks for feedback. Helps cut patch with scissors in smaller piece on mechanical areas like shoulder and have used on neck. The Fentanyl patches I've used in past provided challenge keep from falling off and real hazard if children put in mouth could be deadly. Reported that brand to FDA. Best!

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  • Posted

    Hi ingy,

    My AS first started causing me issues when I was in my early 30s. This was when it first attacked my SI joints. I could not lift anything, stepping off a curb was extremely painful and there a period where I could not walk. Physio did not help, so I lived on muscle relaxants, pain killers and NSAIDs. I never did get diagnosed at that time. After about two years my issues just 'went away'. I'm been increasingly stiff since then, but as along as I don't pinch a nerve I have not had too much pain since then. Although I'm currently suffering a flair up, which is causing other issues.

    I've always found that being active helped keep my symptoms at bay, but at your age and condition, this likely won't be an option. The Biologics can help, but they don't reverse damage, only prevent the joints from getting worse. I can no longer take NSAIDs, as they think my Kidney damage is from years of taking NSAIds.

    Good Luck

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  • Posted

    Hi Ingy. Sorry you are having so much anguish. I too was totally disabled by AS, but have done the research and managed to put my disease in remission. I won't go into all my detail here, but will be happy to do so if you ask. Suffice it to say I was bedridden for a full year, with all of the lower vertebra in my spine fused together. I have now been off all medication for 8 full years (pain meds, biologicals, NSAIDS, etc.), and skateboard every day at age 54. 

    I found that arthritis for me was nothing more than the most prominent manifestation of system-wide inflammation due to poor diet. We literally dig our graves with out teeth. I began understanding what true healthy diet was, stayed with the diet religiously for a full year (but I saw positive results almost immediately), and began tapering off the meds as I felt better. I too am HLA B27 positive, but all my disease indicators are now back to normal (actually better than "normal"wink.

    If you can't pick it and eat it raw, isn't food. Bad food triggers inflammation in the intestines, with soon spreads throughout the body, which accounts for all the other symptoms AS sufferers get like low thyroid, adrenal fatigue, insulin intolerance, etc. I eliminated ALL starches from my diet, even supplements and aspirin due to the corn starch they use as a binding agent, and stayed strictly with meats, cheeses, green veggies, nuts and low sugar fruits. I have learned alot since then. I added more foods back to my diet after all of my food allergies settled down, which is really what most diseases are.

    You will need to become a health expert, and I'd suggest following an holistic guru that truly know how to heal. Dr Bergman on YouTube is the best that I've found. He is a functional medicine doctor who treats disease by restoring general health. He says that you cannot cure anything my managing individual symptoms like cancer or arthritis, you need to go downstream and find out what is causing it, which is almost always food, toxins and stress. 

    Here is my diet:

    1. Gluten-free foods (no wheat, flour, barely or rye...creates gut inflammation and bleeding).

    2. Low lectin foods (leaky gut allows lectins entry into the body, which attach to the cell wall sugar molecules in every tissue in the body, which triggers the immune system and causes inflammation).

    3. Low sugar/glycemic foods (sugar is highly acidic, and is like throwing gas on the fire where there is inflammation).

    4. Balance acidic with alkaline foods (acids like meats and sugars are free radicals, which strip the cells of it's electrons causing tissue damage.It also forces the body to neutralize these acids by buffering them with minerals like calcium, which leads to soft bones).

    5. Avoid all processed oils, which become rancid very quickly and turn into free radicals. I only use cold pressed virgin coconut oil.

    6. Studies show that at least 50% of your diet needs to be consumed raw, otherwise your body goes into a state of leukocytosis (body does not recognize cooked food, and treats it like an infection by triggering the immune system...leaky gut).

    7. 30% of your oils need to be omega 3 fats (flax seed, fatty fish, ect.).

    I personally eat 33% carbs, 33% protein & 33% fats using the above guidelines. My typical daily diet includes one can of sardines, tall blender of veggie smoothie with pea protein powder & fish collagen powder), one avocado, two eggs, cauliflower rice mixed with sea salt and coconut oil), tablespoon of almond butter and real honey (much honey is fake, so I use certified organic made in the US), cup of berries, and one sweet potato or yam (always go organic...boil cubes, drain add coconut oil & sea salt, then mash with a glass cup), beef patty three times per week), and chicken three times per week. I began adding legumes after I healed, but they need to be prepared correctly to neutralize the lectins (boil them for ten full minute). 

    Of worthy not is the Okinawan diet, the longest living population where the average 99-year-old is still fully mobile (and fertile!) and continues to harvest the fields. They mainstay of their diet (70%) is sweet potato, which interestingly is the only low lectin starch. Rest of their diet is 2% oils, 6% meats/fish, 10% rice, and some veggies.

    Hope to hear from you.

    Bobbie

     

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  • Posted

    Hi ingy50 my names Jeff and I'm also new to the forum. I was diagnosed with AS in my mid 20's but it wasn't till my mid 30's that I started any treatment and by that time most of my upper spine had fused. Now I'm 42 and my hips have been giving me bad problems and my rids hurt most of the time and I'm having shortness of breath. I worked up until 2 years ago and now I'm trying to get SSD, Hope I get it because I've pushed it as long as I can. The only med that helps me is Enbrel and I've tried about everything, don't get me wrong I still hurts most of the time but it's bearable. Now If I'm sick with a cold or something like that I cant take Enberl because of weakened immune system and without it I cant walk across the bed room my wife has to do everything for me.

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