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Posted , 8 users are following.

wall1409
wall1409

Hi

Long story short at 48 I started with left hip pain whilst walking on the beach, hip was fine but X-ray showed degenerate disc damage if lower back. Now aged 55 I have OA of complete spine which can’t be operated on now as I’m too risky after a subarachnoid hemorrhage in November 16 . I have arthritis in knees shoulders hips and hands, my fingers are turning to my pinky. I have awful pain daily and really struggle laying down in bed, recently I started having elbow pain again bilateral and visited GP who without ordering X-ray told me this will be arthritis. Has anyone else on here had such progressive arthritis?  I’m now using a wheelchair permanently outdoors as my physio recommended I don’t use crutches or my frame as I’m putting too much pressure on my neck as it’s pretty bad, I also get vertigo since stroke so I often have to use wheelchair indoors too. I’ve piled weight on due to medication and lack of mobility and trying so hard to lose it with a very strict diet and gentle chair exercise 

1 like, 11 replies

11 Replies

  • susan67756
    susan67756 wall1409

    Posted

    Hi, it sounds like you're in a bad way and that can make it very difficult to turn things around. However, my story may give some hope and some ideas.

    I was diagnosed with hip OA at age 42. Due to the history and onset I never accepted the diagnosis - despite it being confirmed by countless health pros. I was certain it was muscle imbalance and, despite it taking me ten years to figure it out, I unravelled the mess and now I'm fine. 

    I have helped others to achieve the same and it's become apparent that there is a distinct pattern that holds true in pretty much all hip OA cases. The thing that may be of interest to you is that mine rippled through my whole body too - spine, neck, shoulders, hip, knees and feet. I managed to hold onto fitness that let me cope until I found the solution. However, I went through spells of chronic, uncontrollable pain 24/7 in neck, hip, back and shoulders. 

    If I had believed the doctors I could well have ended up in a wheelchair. 

    There IS hope for you. 

    How good is your physio? I found most to be useless - fatalistic. 

    The starting point I'd suggest - although I don't know how easy it would be for you is self myofascial release as this could ease some of your pain. If you don't know what I'm talking about here and want to learn more say the word. 

     

    • elizabeth04821
      elizabeth04821 susan67756

      Posted

      I like the sound of self myofascial release! I've got bone on bone arthritis in my knee , its  causing me to walk like a wind up toy or penguin , this weekend my back has been sore  and I can hardly walk . Its actually easing off a bit now , I've kept pottering about and applied some Tiger Balm but terrified that it comes back ! 

    • susan67756
      susan67756 elizabeth04821

      Posted

      This may be of interest to you Elizabeth. It's just a pilot study, but basically they found that treating trigger points around the knee relieved knee pain in people on a waiting list for knee replacement surgery - their pain wasn't coming from the joint, but from the trigger points.

      in this study they used injections into the trigger point, but massaging those points should work just as well. It costs nothing but a bit of time and experimentation so has to be worth a try?

      http://www.impossible-takes-longer.com/blog/2015/09/25/eliminating-pain-diagnosed-as-knee-osteoarthritis/

      This chart will help you find the spots to massage. To find out how to do the massage just Google 'Trigger Point Massage'

      http://www.triggerpointcharts.com

    • elizabeth04821
      elizabeth04821 susan67756

      Posted

      I read the article with great interest and hope !  Yesterday I felt like I was coffin ready but I'm going to give this a very good try  ! Thank you for the link . 

  • loxie
    loxie wall1409

    Posted

    Hi Wall, so sorry to hear of your progressive problems.  Have you looked into hyrdrotherapy?  Phyio in water is very effective as there are no weight bearing issues and if done in warm water, its also very soothing and relaxing - stress can aggravate already existing symptoms so any way of reducing stress can help reduce pain.  Keeping joints flexible when you have such osteo problems is very difficult but exercise in water is often possible when weight bearing exercise isnt.  Dont know what meds  you're on but a lot have severe side effects, I too gained a lot of weight from steroids and pain meds.  I now use ginger a lot - both as a tea to drink and also I mince and mix with body lotion and rub into the painful joints - very effective.  I hope you find something to help you. xx

    • wall1409
      wall1409 loxie

      Posted

      Hi

      Thanks for your reply. I’m not allowed to go in a hydrotherapy pool now since my stroke as my BP jumps up and down. All the doctors can do is increase my meds 

  • jo42444
    jo42444 wall1409

    Posted

    Mine started at age 57 with pain in my shoulders and hips. I was diagnosed with PMR and on steroids for 2 years. When off the steroids the pain was in shoulders hips back hands knees and feet.  The pain is there every day and depending on how much I do will depend on how bad it gets. It’s very bad in the morning but a hot shower and getting moving helps. I have been taking Plaquenil for 9 months and it helps for hands and feet knees but gives me terrible muscle pain in my thighs. I went from no damage on exray  to moderate damage in 3 years. I guess we are not alone although I think most people get Osteoarthritis  in 1 or 2  joints not 15   
  • shirley_90819
    shirley_90819 wall1409

    Posted

    Hi, it's kind of a relief to know I'm not the only one who has almost all my joints affected with osteoarthritis. My gp keeps testing for ra but comes bk negitiveso that's it he doesn't offer any other treatment . I do get a small amount of swelling in joints but no redness. I've just had my neck rebuilt, cervical myelopathy with severe cord compression. C2-7 Took hip bone to do bone grafts, been a long recovery! Had to wear a hard collar 24/7 it's now 5 months down the line and can't wait to get the collar off. I've had to have long term sickness off work and worried if I'm going to be able to return. I also have advanced osteo in left hip, waiting total replacement but been put bk due to serious nature of my neck. I was loosing feeling in arms and legs tripping over, dropping things constantly . When my neck has healed sufficiently I can have my new hip. Also have  Moderate osteo in shoulders elbows wrists knuckles fingers lower bk both hips both knees ankles and now toes. I'm 56 and feel 86 most days. I sit in the house day after day, can hardly walk into the kitchen but I need to get bk into work as in surviving on £56 a week esa ( paid child tax for my daughter)which is why they won't pay me anymore, say I have sufficient to live on, just don't no how much longer I can stand the pain. Really had enough and my GP just says it's only osteoarthritis nothing really we can do and just gives more painkillers. My daughter never goes out bless her. Just feel a burden, what's the point it's no life for me or her. Looked into myofascial release but no one in my area for over 50 miles any other suggestions pls? 

    • jo42444
      jo42444 shirley_90819

      Posted

      Wow Shirley that’s just awful. I don’t know how you keep going. I have a really good GP who has also tested me many times for Ra and other things all with negative results. I take 100 mg of Tramadol per day in the morning and do tai chi plus the physio exercises for strength. I think I would have been worse off if I didn’t. I also go to the pool and do some stretching there too about 3 times a week.  I applied for disability and they gave it to me which was a god send. Having financial difficulties is putting more stress on you that will effect the disease I believe. I hope you can get something to help with this. My GP I believe was instrumental in helping get disability but the diagnosis came from a Rheumatologist which I believe carries more weight here in Canada.  Oh and when the pain gets super bad I sit on a chair in the hot shower. Hope this helps. Joanne
    • shirley_90819
      shirley_90819 jo42444

      Posted

      Hi jo thanks for replying! I will look into applying for disability. What was your diagnosis? Do you have Ra or osteo? I cannot drive at the moment until my neck has healed and I can rotate it enough to drive.So unable to exercise I used to be a fitness fanatic belief it or not. Can't wait to drive again  though at least I will be able to get out, my sister has suggested using a mobility scooter go to town and have lunch. Something to look forward to.

      My gp is not very sympathetic, there are many doctors at the practice but most of them are locums and don't stay long or know my history. But maybe I should change surgeries. 

      I take zomorph 30mg ,paracetamol x2 , naproxen and pregablin  morning and eve plus oramorph for break through pain. Does worry me the amount of morphine I'm taking but hopefully the doctor does best.

      Thank you for taking the time to reply and I will look into disability.

  • erela
    erela wall1409

    Posted

    dear Wall,

    My heart aches for you and all of us fellow sufferers of chronic and acute pain...... I am in the same boat as you with exception to the wheel chair as I cannot sit on my tail bone due to spine issues........ I need most of my joints replaced..... and something is "wrong" with my bones...... and my heart is too weak..... so I was told to go home and take pain meds......... and suffer...... they didn't add that but I did...... I am 60 and have had bone issues since childhood...... I have been taking it for years....... I am tired of either being told I faking...... or bit the bullet and go forth........ in my case I don't think I can even crawl anymore! lol.......  If there is any way you can get to a heated indoor pool I would go there....... hot water is the only place I find relief...... Pain meds take the edge off the pain but do not get rid of it.......  Acupunture helped me for a while....I too have limited mobility and have gained weight....... this I hate almost as much as the pain.........

    I am going to add you to my nightly prayers....... I wish I could take your pain.....I would.... take care.......Erela

    write me and vent anytime

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