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Spinal stenosis

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Diorbhail
Diorbhail

Had acute pain in right leg for 15 months which Gp was saying was hip and knee osteoarthritis and was prescribed cocodamol and later Tramadol which only took the edge off. Had knee and hip x-rays which showed minimal arthritis. Eventually I insisted on seeing a hip surgeon privately and he not only was the first person to listen to me but actually agreed that it was my spine. At last I was able to get an MRI scan done which confirmed lumbar spinal stenosis. The acute pain has eased now but I'm not able to walk far and have back pain as well as now both legs weak. I'm informed that steroid injection don't last long and surgery may have to be repeated after a couple of years or so. I'm not sure that it is worth the risk and considering to try acupuncture. I know there isn't a cure but some pain relief would be nice.

7 likes, 108 replies

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  • joanimation
    joanimation Diorbhail

    Posted

    I'm from the US. I have suffered with my back since my mid twenties. Arthritis? That was my dx. I lived at the chiro. I can't begin to tell you the money I just threw out the window! Nothing relieved this cronic pain. Here and probably in the UK, doctors do not want to give any narcotics because of people who are NOT suffering, abuse the drugs. I have been accused many times as a "drug seeker," just crazy. They have the mris,so many of them, it's there in b&w, oh but noooo, just leave and suffer, here is a muscle relaxer and tramadol. I am 56...56!!! A mother of 3, and all my children are starting the same way as myself. In there 20's back pain that almost prevents them from enjoying life to its fullest when we know there is relief. NO one should suffer like this. I was dx with fibro...just a piece of advice, when you have fibro and stenosis...NOTHING works. no procedure, no accupuncture and certainly no surgery. There isn't an ortho or pain management dr who will touch me now, because of the fibro. Only the drs who want to make some quick cash! I have had it all done. 10 epidurals, strectching of my spine ( $6,000.00 right out of my pocket), acupuncture was completely worthless. If you are younger, in your 20's or 30's I did yoga, I do it still today (as much as I can, stenosis only gets worse with age) I was pretty much painfree, some aches and pain, but not like i first started and not like today. It almost keeps me bedridden. I did not find out that i had fibro until after my first epidural. It ruined me, and off i went to the chiro once again. NEVER, EVER get any procedure done if you have fibro with stenosis. I can't tell anyone this enough. YOU WILL GET WORSE...and I didn't believe that was possible. Every dr. knew I had medical insurance, and many took advantage, and unknowingly, I put my trust in drs. thinking, PRAYING after this procedure I would be better, until I met a pain management dr. who told me the truth. Nothing will help us. Fibromalagia usually effects women primarily. There are trigger points on your body, when pushed on, you will hit the roof. So PLEASE, before anyone out there goes for any procedure, get dxed for fibro. The chiro can help, an inversion table helps too, and massage. Pills take the edge off and stretching does help a little, but you have to be careful. I spend my life in bed mostly, so very depressing, And depression  is not something that helps at all. In fact it will make the pain worse. Stress also. So, try yoga, meditation, the chiro (I have been so much, I can do it myself now) and ice. I have all the herniations and buldges in the lumbar, since my twenties. But after having been dxed with fibro, no procedure yet will help. Yes, my hips ache, my legs are weak (sometimes I can't sleep because my legs jump uncontrollably, a spasm of some sort) I rub down with vicks, believe it or not it works for me better than any patch or rx gel. That's me, I hope it works for you. It is well worth the dollar it costs!! I do bike, outdoors, in the warmer months, and sometimes I'm in agony for days...so i try!! no jumping, no running. bad, bad, bad!! I work for myself, because I never know how bad I am going to be from day to day. Even tho the drs say it is common, and it is, why isn't there any relief, or has medicine just get lazy...my heart goes out to all of you. I haven't given up, i refuse to go on disability. I exercise for an hour, yoga or weight training, trying to build up the muscles around the joints. This disease effects the young, middle aged and elderly, and it is unbarable and unfair that some with no pain have abused rx drugs to the point that drs are afraid to rx because they may lose their licenses. Or they insinuate that those who REALLY suffer are a drug seeker, here in the US a dr. can pull up what you have been rxed on a computer. I was rxed 10 percosetts from a dentist for a root canal and the med dr. ASSUMED i was a drug seeker very openly. What a horrible accusation, I felt 1 inch high!! Even with every MRI report in hand! WHAT?!!!!  If anyone has ANY answer, alas i have about given up. All I know is what I have told on getting any relief, but i feel that there is not going to be a cure in my lifetime.
    • Rob777
      Rob777 joanimation

      Posted

      Hi Jo, I have lumbar stenosis, not fibromyalgia. It sounds horrendous. I looked up the nhs information site here and it says how difficult it is to diagnose and help, but you finally found a medic who knew what you have and could help that way. http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Diagnosis.aspx You are probably way past this stage by now. They are busy trying to privatise medical services here in the uk but mostly at the moment doctors don't have perverse incentives to overtreat patients, and then blame the patient when the treatment doesn't work.  Have you tried a rowing machine at the gym by the bye? Like biking, the posture is possible if your situation is complicated with stenosis too, and it's good exercise for core and back muscles. Are you in a group of sufferers? Self help groups would probably help.  I won't go on, but am sure you'll get other replies and suggestions. Rob
    • judy75802
      judy75802 joanimation

      Posted

      I know how you feel. Went to the surgeon that did my husbands back and when he found out what I was taking he told that it was a very bad medication and that I should quit it. I was like, duh that is why I am here! First he told me that when it gets so bad that I cannot stand it to come back and see him and we can do surgery. So I go back to see him cause I was ready at the first appointment. I was still hurting, so on second appt. he wants me to try physical therapy. I have a hernia around my navel and sometimes when I sit straight up and raise my right leg it hurts my left hip. It is the craziest thing and I am wondering if I am going to be able to do much and will it help? I have constant pain but I try to tolerate it and ibupropen helps when it isn't too bad. I feel like it is gonna kill my kidney or liver or whatever it affects but what can you do. And you are so right. They don't want to give you what will help that you DON'T really want to have to use anyway! Then they make you feel bad about it. I quit taking the big stuff when the pain lessened and am saving them for the bad days. I think it is a shame that you have to save back your meds so that you can make sure you have them for the horrible days and try to squeak through the days that you could actually use them, but the pain isn't excrutiating enough. I don't actually have a script for the pills anyway, it was just given to me after my gp saw I have the stenosis and have a couple of months to get into see back man. Good luck!
    • joanimation
      joanimation Rob777

      Posted

      Thank you for your reply. Yes, I have heard it all from the drs. Combo spinal stenosis, fibro and IBS together, when all 3 decide to immerse, not at all fun for anyone!! I just keep plodding on, day to day, like everyone else. Stay as well as possible. I have not tried rowing, and I have heard swimming is great too for all back, muscle, nerve conditions. I will give both a try, can't hurt! Thanks for that.
  • judy75802
    judy75802 Diorbhail

    Posted

    Hi. I just found this discussion today. It is amazing to find how we all have a lot of the same symptoms but doctors don't seem to see that we are all with the same diagnosis and that it IS possible to have  differing symptoms. Not a great difference but varying. Has anyone else had trouble with low back cramping type pain? I have had this occasionally since my 20's. It got to the point in my late 40's and 50's that I could only walk or stand for about 5 minutes or so if it was a bad day, and then have to sit for a minute or so and then could go again. Bending to brush my teeth would set up the pattern for the day. Bending to throw the laundry from washer to dryer does the same thing. Standing to do dishes or bending to put things away. They did an Xray and said it was scoliosis. Saw the pic myself and it was very minor. Endocrinologist suggest if I could avoid steroid injections to do so and I have seen too many times that they may work if they take and you are stuck for months with no relief if they don't. Now about 9 months ago I thought I had hurt my left hip. Tried to stay off of it and found myself sort of dragging my foot and stubbing that toe on occasion. Then the pain went down my leg to my foot and constantly moving from thigh for a while and then to bottom of foot to where ankle bends to inside of calf making sure it hurts everywhere from day to day. It was awful for a month or so and waiting to go to doc it settled down a little. Now it gets really bad if I sit on hard chairs, driving in my car and the best place for me to sleep used to be in a recliner but have slept about maybe 3 weeks in my bed in the past 9 months. They want me to do therapy but this stenosis is congenital and I am 61 and it was already a small canal and with age it gets smaller so how the heck is therapy gonna help? I am at my wits end. Taking ibuprophen daily and have some stong pills saved in case it gets REAL bad again. Almost couldn't take it last time and thought about going to ER twice cause it was so bad. Have any of you all had anything with both of those issues working together?
    • joanimation
      joanimation judy75802

      Posted

      Yes, you may have IBS as well. The stress from being in chronic pain isn't good in any way on the rest of your body. I have been to the er many times, especially when doubled over in a fetal position from lower back pain and excruciating cramping. I was DX after upper and lower gi's, and w/o a doubt I was told I had divoticulis and IBS ( also genetic usually) they had found seven polyps which were removed. I am very careful with eating now. I still get the cramping and the bathroom issues that go along with it, but not nearly as much. Check on possibly changing your diet, it can't hurt. I notice carbs kill me, even though I do not have Celiac's disease, which is often overlooked here in the states. But sometimes if I'm stressed from pain or just life situations, I will get a nasty attack. I meditate, and do yoga as much as I can. This helps with not getting tummy attacks as often and the yoga is a stress reliever as well as a stenosis treatment. Its very much like pt, which I do to.
    • judy75802
      judy75802 joanimation

      Posted

      Hi. Yeah I do have IBS but this is different. A total different pain that is brought on by walking or standing. With IBS I cramp in the front also similar to childbirth pains until I clean out my bowels. This is definately lower back pain that is more like someone grabbing your lower back and squeezing as hard as they can or a cramping feeling. I never seem to see anyone else describe this and I don't think it would be the mild scoliosis I have cause It started when I was young. Now I have noticed recently that if I carry something up front that is a little heavy it definately makes it worse!
    • joanimation
      joanimation judy75802

      Posted

      Oh yes, I think I know that pain too. I don't get it as often as you, I am thinking. No, that couldn't be from a mild scoliosis. That sounds more spinal stenosis related. When standing in one spot too long, yes? Like doing tons of dishes, I find myself leaning from one leg to another to get through the job to finish, while that type of cramping happens. What are you doing to help get healthier? It's a tough road. Doctors here just ignore the complaints, pretty much shrugging their shoulders! They haven't a clue, right? So, I do everything, and dilegitently! It's really hard to push myself, and its very frustrating. There are days I just feel I can do nothing, but lay in bed. And I know that makes things worse. Fighting that losing battle. I have a few extra pounds, I am working on that. Most of the time I don't want to eat, the pain is just too much and eating is the last thing on my mind. Are you trying pt or stretching? Wondering what helps you. We have to try all different types of things to make it easier day to day. Please tell me what you have found that helps you. Maybe if we put our heads together, we can make some days better. Jeesh, it can be depressing and immobilizing and I know thats so bad for all of it. I'm sorry you are suffering, but I think we might be able to help ourselves more so than the drs. They aren't the ones experiencing all this, so they kind of treat patients like us not so well, and listen with half an ear. I guess they don't know how to treat us and get cold from hearing all the complaints from so many. I really don't believe they have the answers, maybe because they never experienced pain quite like what we have. Sad and ongoing situation. But perhaps if we all try what helps for others, we may at the least have a "normal" life.
    • judy75802
      judy75802 joanimation

      Posted

      It is great to know someone else who you can share info with. I am sorry that you are going thru this as well. I have never been sick in my life and about 4 years ago I literally fell apart. Anxiety and depression which I always had but all of a sudden thru the roof. Then find out I am hypothyroid and have severe vitamin D shortage. Could barely get around and didn't care if I did or not. I am doing decent on the mental health, thyroid is supposed to be good according to numbers and so is my D but I hear ya. No energy at all, no reason to really get out of bed and my house is a filthy mess. Hurts to do dishes, even loading dishwasher hurts so I prefer if I can to do them by hand. Can't dust cause by the time I move everything to dust my back hurts and I have to sit down and then dust and sit and put things back and vacumming is totally pretty much out of the question cause I try not to bend but you really can't sweep without bending some and that is the bend that kills me. Same bend as when you brush your teeth or clean toilets etc. Yeah standing in one spot is a killer. It's better if I can just walk a little but I am 61 and it has gotten worse in the last same 4 years as the rest of it started or I became aware of those issues. All I do for relief is sit down or take ibuprophen which I have to be careful of cause I have also aquired mild hypertension since this all began. Am finding out that alot of my issues go hand in hand. I too have put on weight which is bad for joints, blood pressure and about everything else! And all the Drs. say to exercise and I think, "did you just not hear me? I said my back hurts when I walk!" I would love to walk. Before I quit my job I walked 1 mile to 2 miles a day on my lunch hour now I can barely walk across the yard on a bad day. I am afraid of surgery but I have no life like this. We live on the Gulf coast and I haven't even been to the beach this year cause I don't feel like it and walking thru the sand to get to the beach is even worse than regular walking. I am to start PT next month but am not sure how that is gonna work. Somedays while sitting down if I raise my right leg my left hip (that's my bad leg) hurts! It's wild! I will try it but I am starting to feel as though I may just have to put up with it? And I have had the cramping back pain since my 20's and it just decided to be more frequent. They tell me my stenosis is congenital so I have have it from birth so now because of age the canal is shrinking even more. The whole thing is crazy and the Dr. I saw had done  my husband's back and was good but everything he told me the day I saw him is pretty much the opposite of what he says now. Thought I might be crazy but my daughter heard what I heard, so needless to say that worries me! Please keep in touch and I will also!
    • carole1959
      carole1959 joanimation

      Posted

      Hi-i have spinal stenosis,severe pain as most other sufferes. Ive had one surgery in 2010. Wont go into my history tbo but you may find unbelievably that cycling doesnt hurt (leaning forward helps usually doesnt it?) I tried a 2nd hand static and now have an old cheap road bike. I was very wobbly holding it up and after pexxling a d precer only flat parks etc but boy is it fantastic to a tually get somewbere fast and pain free. Its strengthening my legs and everywhere and helps with pai killer weight gain. It produces chemicals which are natural painkillers too! Im really pleazed i can do some exercise! Maybe its not a miracle cure but its helping me😊

  • Oscarlulu
    Oscarlulu Diorbhail

    Posted

    Hi I have the most excruciating pain in my leg starts in my shin goes right up my leg, I get this if I walk or stand for more than 5 minutes I have to sit down it takes about 10 mins to ease. Also bad pain in other hip am walking like frankensteins monster.

    Am on cocodamol 30/500, ibruprofen and was taking gabapentin but they didn't touch it,

    Am usually very active but haven't been to work since Nov . Have had a nuclear bone scan get results tomorrow as I have had thyroid cancer so gp or physio won't do anything until I have results.

    If this is clear I am going to ask to be referred to a consultant privately as it will be a quicker step onto nhs treatment.

    I had an abdominal operation beg of Nov but they are saying it is just coincidence but I'm not so sure.

    The pain in hip feels like bone pain but have also had a pelvic X-ray that was clear but leg feels like muscle or nerve can just about make a cup of tea before having to sit down.

    I am just getting so fed up and in tears half of the time.

    Sorry for the long post

  • frank24438
    frank24438 Diorbhail

    Posted

    replying to a post a  year old ???. hi. diorbhail (i dont do capitals in e mails ). ok i have had lumbar stenosis for 5 years now, after years of "bad back" episodes and enjoying a period of calm when the symtoms of stenosis started, then a bit at a time. my phyisiotherapist sent me for a mri, my sum of knowledge is not great, though i google the subject continiously, get to know the enemy i reckon. about pain relief well its not easy and better explained by reading about it, its a long way from a slipped disc medication, i have found my current medication of pregabalin helpfull (300mg twice daily)but i started on lower dose, proceed with caution.  it has calmed the painfull leg cramps and thats about it, oh about the op i'm with the doc, waste of time on a 76 year old.  take care mate,all the best frank.
  • Inversion_bel
    Inversion_bel Diorbhail

    Posted

    Hope I caught you before having surgery or injections in your back. I don't know about acupuncture personally but my husband had a type of acupuncture done about a year ago. I can't remember the name of it but I do know that one of its spokesmen is Terry Bradford, former Pittsburg Steelers quarterback. My husband actually choose this because he isn't a candidate for inversion due to the 3, level 2 fusions he has had. We don't recommend surgery to anyone unless you have tried everything and your pain is still to much to bare. Anyhow I decided to try Inversion and I would recommend it to anyone. I didn't buy the expensive one from the infomercial but got a really good one from Academy Sports for about $500 and it is awesome. I used it the first time and was amazed at how awesome I felt as soon as I was done. The pain was gone and I didn't need to use it again for a few weeks. Anytime I overwork myself and start having pain I get in and hang for about 2 to 5 minutes and when I'm done I feel like a new woman. Talk to your doctor first but honestly if you have stenosis or bulging disc you are a candidate. If you have had surgery and have a cage then you should NOT use it. Good luck. Praying you have or find relief soon
  • helene68166
    helene68166 Diorbhail

    Posted

    Hi,

    This is the first time I've used this forum and feel for everyone who is suffering.I would like to know how inersion therapy works is it available on the NHS? I don't know what else to try.I've been dealing with spinal stenosis for over 15 years now and walking (standing is the worst) has become increasingly difficult.I've been on all the medications mentioned to no avail,had the epidural which was a nightmare (Dr. had problems getting the needle in it was agonising) sadly it did not work.I've had epidurals in the past when having my children with no problems.I'm not too keen on surgery as I'm not a good candidate due to other health problems.Is it possible my present symptoms i.e.feel like my hamstring is being ripped to shreds and the pain & pressure on my hops is reminiscent of childbirth I also have what feels like an electric currant running down my leg(sometimes both legs)and under my foot 24/7 I have a business to run which at the moment is on hold I feel as though everything is going pear shaped.I'm almost housebound at the moment and am depending on my husband more than I'd like.I was also referred to the pain clinic where I was given a tens machine unfortunately not much help either. I know I'm beginning to sound desperate but as this is my first post I suppose I'm "getting it all out" to others in a similar situation.We are in the process of starting a new side to our business but I'm having severe doubts as to how I'm going to cope.I'm already putting in 16-17 hours work a day (mostly sitting) but get little excercise so that brings it own problems.I really need to stay positive and find a little hope somewhere si I'd be grateful for any suggestions.Apologies for rambling on and my best wishes to all who are looking for a solution too. 

    • june40050
      june40050 helene68166

      Posted

      Hello. I too am new to this forum and unfortunately I cannot help or advise .I am 77yrs of age and do not have the added anxiety of having to work. My main problem is pain relief and which is considered to be the safest.Sorry I cannot help. I'm housebound for most of the time now.I do hope someone will be able to offer some good advice to you as it must be very worrying when you are in the process of starting a new side to your business. Very bes wishes, June

    • helene68166
      helene68166 june40050

      Posted

      Many thanks for replying.It's good to know that others out there can understand 'my situation' although I am so sorry that you are all suffering.I sometimes feel that those who don't have this condition can't really grasp the severity of the pain we are in and how debilitating it really is.I took for granted little things like hopping on a bus,doing a little window shopping etc.,things I can no longer do and it saddens me when I think back to when my last grandchild was born and I couldn't lift him when he cried out.My son and his wife are due to have their 1st.baby in a matter of weeks and I'm desperately hoping that I won't have to go through the emotional pain again, it affects us,not only in the physical sense but in so many ways.If I keep quiet and say I'm fine,when asked I feel like I'm playing the martyr if I tell the truth then I feel like a constant complainer! do others feel like this?I'm presently waiting for yet another referral back to the hospital for a further scan to determine if anything has changed since the last one a couple of years ago.If there are changes I'm not too sure what they can do.I've checked out inversion therapy online so I think I will ask if this might be suitable for me as it seems to have worked for some people.I live in hope!.In the past I've been given gabapentin,amitriptyline,pregabilin and some other medication I can't remember the name of.All I know is the side effects were awful I was so agitated I tried to get out of the car when we were on the motorway my poor husband was at his wits end wondering what I might do next!so I was taken off that drug.As I said earlier the tens machine does little to help either so I'm not sure what's left. I'm presently taking amitriptyline again and dihidrycodeine leaves me feeling giddy but the pain is still there.The worst for me right now is the hamstring pain if anyone knows how to alleviate this even a little I'd be so grateful I try to sleep with my leg on a high pillow but I have to say it's not always a help (I'm writing this at 3.15 a.m.) My sincerest sympathy to all fellow sufferers and best wishes.Here's hoping a new medication that actually works can be found soon.

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