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Educate yourself

Posted , 11 users are following.

thisolegirl
thisolegirl

I was at an excellent seminar sponsered by the Arthritis Foundation & Cleveland Clinic in Westlake, Ohio last week. I was amazed at the number of attendees who do not understand their condition which was evident by their questions & conversations.

Osteoarthritis is a rough road since the mechanics of it are not fully understood. It's called the wear & tear arthritis which it is to some extinct but we don't understand why this happens. Other than NSAIDS & pain meds there are no medication regiment for this disease. As with the state of medicine today, there are lots of ways to treat the symptoms and few ways to stop the cartilege destruction .

I am totally frustrated. I don't want to spend the rest of my days doing exercises, using ill designed, pain in the ass braces, living on tylenol & NSAIDS, ice & heat & joint replacements & joint revisions. Who ele feels this way & what are you doing about it?

1 like, 19 replies

19 Replies

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  • jacquie16342
    jacquie16342 thisolegirl

    Posted

    I totally agree.  All I'm told is arthritis is incurable.  Makes life difficult and depressing for me, my family and friends!!! 

  • themoon66
    themoon66 thisolegirl

    Posted

    I agree too, but what are we to do?  I used to be a keen long distance runner, swimmer, badminton player etc.  All that has had to stop due to unbearable pain.  Only manage one pilates class per week these days, and even that needs me to stuff myself with Naproxen, Paracetamol and Codeine.  I cry when I think of how fit I used to be.
  • holly83
    holly83 thisolegirl

    Posted

    Hi thisolegirl,

    Please see my contact email under my profile page - or you can call. There is much to discuss and I have a lot of personal experience with arthritis since I have no more cartilage in my right shoulder joint and live everyday in chronic pain.

    Kind regards,

    Holly

  • Anhaga
    Anhaga thisolegirl

    Posted

    NSAIDs actually interfere with cartilage regeneration.  Use other means to relieve pain whenever you can - warmth, massaging the joints (which seems to release synovial fluid which "oils" the joint).  Do what you can to gently maintain full range of motion so joints don't freeze up and become less useful and more painful.  I have taken a fairly large dose of glucosamine (in capsule not pill form) for many years and I think it must have been helpful or I'd be much worse off by now.  Diagnosed at age 40, now 71, OA in lumbar and cervical spine, feet, hands, and developing in knees. 

    • kate63976
      kate63976 Anhaga

      Posted

      Hi Anhaga, 

      I am 70 and have had years of back and neck problems About 3 years ago my acupuncturist gave me a brochure on Makko-ho which is a stretching method. It takes me about 10 mins three time a week to do and since doing the 3 major stretches I have taken myself of nsaids and only have rosehip and turmeric capsules daily. I am on no other medication.  Occasionally I do get flareups but this would happen about 3 times a year and with heat pads it generally stops after 6 hours or so. I also have arthritis in my thumb joints and have being having PRP now for 4 years and will continue to have it until the medical profession have got their act together regarding stem cell therapy. 

  • gail_71688
    gail_71688 thisolegirl

    Posted

    Yessss... I’m with you. So tired of taking paracetamol for pain and it’s pretty useless at times. That’s all I take as trying to steer clear of nsaids.. sometimes pain is unbearable. So....Disheartened by my GP and rheumatologist saying keep your weight down and keep exercising etc . I am not overweight for starters and quite honestly at time even walking is difficult..  I am doing the best I can but so frustrated as have always been very active...running up and down stairs was a breeze now a major accomplishment. 

    Am hoping and looking for a miracle.. lol.

    Hang in there...

  • jules130
    jules130 thisolegirl

    Posted

    Hi thisolegirl, I can totally understand where you are coming from. I have had one knee replaced 9 years ago. Still get swelling, pain and have limited bendage. I also have had septic arthritis in it. I was due to have other knee replaced but decided to go and give stem treatment ago.I am so happy with my results. I recon I have 80% less pain, intensity of pain and length of pain. All was due to osteoarthritis. I find that doing exercises aggravates my condition and takes me 3-4 days to get the rid of the added pain. Good luck with your osteoarthritis.  
    • Lala5555
      Lala5555 jules130

      Posted

      jules130 I didn't realize stem cell treatment is now available. Do they give you a shot or how does it work? My low spine has truly crumbled which means the shots that give lots of people relief require outpatient imaging. Drs here are taking patients off hydrocodone & taking it has been the only reason I've been fairly mobile though never pain free.

    • Anhaga
      Anhaga Lala5555

      Posted

      Someone posted recently, I think in this forum, that she had a terrible experience with stem cell.  Just do your research, make sure if you decide to get it that the person offering the therapy really knows what they are doing.  It's still kind of experimental, I think.  If I come across that post I'll share it here.  

    • holly83
      holly83 Anhaga

      Posted

      Anhaga,

      Glad you reposted this...my concern is that as many have stated, stem cell application for arthritis is still in the experimental phase (in the US) and since it's still experimental not covered by insurance. Therefore, it will cost quite a bit for a roll of the dice so to speak.

      As far as I am aware, there is only 1 surgeon in Japan who is using bone marrow stem cells which are processed for 2 weeks along the patient's own cartilage to form new cartilage in a petri dish. This new cartilage material is then re-injected into joint space (only knees so far)) to areas where cartilage is lacking or damaged. He also uses magnets to properly place the cells on a platform into precise locations.  Otherwise the cells do not necessarily go to the desired areas during injections. The question of precision in placement has been a question I have posed to several regen med clinics without an answer yet. They all use x-ray guided injections, but that still doesn't ensure precision of placement.

      I posted a video of the Japanese surgeon a few months ago but will put it up again if anyone wishes to see it. He has had good success with his method and is teaching more surgeons from other countries. So far, only younger patients with some cartilage in knee joints are candidates, but his life goal is to apply this technique for application in older patients with no cartilage and for use other joints. He stated it took about 15 years to develop his current technique. 

      The regenerative medicine clinics that are virtually all over the US now are in quite a dilemma due to not being able to store stem cells from any source for longer than 24 hours as required by federal law. Due to the law, clinics that offer stem cell injections have 3 choices:

      1. use stem cells, regardless of sources, obtained within a 24 hour period in  that same day

      2. use cells that are more than 24 hours old in which case most are no longer viable. In many independent, peer reviewed studies, these cells  have shown to cause serious infections

      3. inject another substance such as PRP (platelet rich plasma) mixed with steroids

      The 3d choice is what most patients receive and of course most of them claim relief and attribute it to stem cells. 

      I just spoke with another regenerative stem cell clinic today. They were very nice and professional and explained their modaliteis, claiming good results for many patients, but they do not in any way perform live stem cell or cartilage transplants which it would seem is what arthritis patients truly need. 

      That said, I don't believe we are that far off from technology that would allow for cartilage transplants using a patient's own stem cells. If anyone has new information on this - since technology is always evolving - please share. Thousands of us who suffer from chronic OA pain might be helped. I remain optimistic.

    • jules130
      jules130 Lala5555

      Posted

      Hi Laia5555, I am in Tasmania, Australia, I had to go over to the mainland( Boxhill, Victoria)I don't know where you are. It is still in experimental stages here. I had my stem cells extracted from my belly.It hurt.My belly was a mass of bruises. After 6 weeks, I had an injection into my knee of my own stem cells.At first my knee felt very swollen. I was using crutches prior to stem cell jab and kept using them for a couple of weeks. Then after 6 months I had another jab. Since then, which was January 2017, I haven't looked back. Not using crutches and not too much pain. My replaced knee is more troublesome than the stem cell treated knee.

    • Lala5555
      Lala5555 jules130

      Posted

      Thanks for your message! It seems stem cells are the wave of the future but here in the US it's not being done by mainstream medical pros yet & not covered by insurance so I'll have to wait a long while for treatment. Meanwhile I'll keep searching for relief & hope your good results continue!

    • kate63976
      kate63976 holly83

      Posted

      Holly83, 

      Please repost the information on the Japanese Surgeon.

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