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feeling at a loss!

Posted , 10 users are following.

helen.leeson
helen.leeson

I have had terrible pains in my hips knees shoulder and feet, after numerous trips to th doc he referred me to a specialist who told me I had osteoarthritis in my knees so did further tests and xrays on my hands and feet, the results have come today and all my bloods are normal it says xrays show mild osteoarthritis only, I still have to go next week for ultrasound on my hands but what do they mean mild osteoarthritis only? It makes me feel like im making up the ammount of pain im in up, it affects me allot I cant walk far or drive far depending what iv done throughout the day dictates if I will be in to much pain to sleep im so fed up I feel like im constantly moaning and because I look ok I dont think people understand the pain im in :-(

3 likes, 24 replies

24 Replies

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  • susan67756
    susan67756 helen.leeson

    Posted

    I firmly believe that osteoarthritis is one of these diagnosis that gets used as an excuse to stop looking for the real problem.

    There are lots of things that can cause pain - many of which are hard to identify. Soft tissue problems in particular are very curable but not easy to diagnose.

    Imagine this scenario - someone with your exact symptoms goes to the doctor and x-ray results, bloods etc are completely normal. They'll keep looking for a cause.

    The reality is that past a certain age most people will have signs of degenerative changes in joints - sometimes severe. Yet most are symptom free.

    I don't think mild oa should be causing this amount of pain. And if you're getting pain with mild oa in hands and feet then maybe, just maybe your knee pain is due to something else too. This is good news in the sense that there's a possibility that this can be completely curable.

    The NHS have a very poor track record for diagnosing and treating soft tissue problems. Once they've ruled out anything serious (and at this stage I wouldn't worry too much about the OA diagnosis - it could well be a red herring), it's probably worth seeing someone privately. Someone that specialises in soft tissue problems. A very good physio perhaps. This wouldn't be too expensive - maybe £35 - £50 or so for a single appointment and it could be a big help. The type of specialist I'd suggest would depend upon your symptoms.

    Can you describe your pain in detail? What type of pain (stabbing/aching)? Where exactly you feel it? Is it sore to touch? At rest? Worse in the morning? When you move? When you apply pressure?

  • marieC
    marieC helen.leeson

    Posted

    I agree with Susan, Doctors, often just go for the obvious, anything else is probably more expensive to deal with so they try to fob us off with "Take some aspirin", "What do you expect at your age", "It's a virus".

    By mild, he probably meant that you could still move, even if it is painful.  Doctors seem to have a way that says "Stop moaning, it's not that bad".  They forget that people have different pain threshholds, that they may have to use the painful part more than others do.  They just cannot see how we feel some of the time and put themselves in our places.

  • helen.leeson
    helen.leeson

    Posted

    The pain is a constant ache its basicaly all my right side it started in my knees yra ago they crunch when I walk, crack when I crouch, I struggle to get up and down stairs as they give way under pressure but sime nights i am in agony but im so restless, they have tested for lupus ect but say that its just the arthritis, I cant take codine it makes me feel ill so they have given me slow release tramadol which is amazing but say I take it today then tomorrow morning I will feel sick as a dog :-/ I feel like nobody understands how I feel and im sure my husband is thinkin shut up haha im only 35 with a 7, 6 & 4yr old 
  • marieC
    marieC helen.leeson

    Posted

    You certainly have your hands full with your family.  Don't stress about what your husband may think, you're only guessing.  Is Tramadol the only medication they can give you that would help?  Hopefully, there will be new medication coming through that will be more effective, even if you are thinking that is all that there I'm is.

    Some people go down the natural route, change of diet etc.  I'm going to try rosehip extract and also Omega 3, and see if that helps. Look for Arthritis Care online and see if there is a group or a course to help with it.  I went on the website and said that I would like to do a course to help me and lo and behold one came up.  The people who gave the course were sufferers too and we were able to exchange tips.  Unfortunately only about 6 people turned up, it was sometimes just 4 so there weren't really enough to make a local group to

    • helen.leeson
      helen.leeson marieC

      Posted

      They have only offered me tramadol as I have asthma im not supposed to take ibuprofen but one doctor I saw said if I cant manage with tramadol to go back and they will give me patches which I have since found out off a nurse friend is morphine :-/ I just cant believe they will offer such strong medication without trying to rectify the cause, I know there is no cure for osteoarthritis but surely there must be something else they can do rather than drug me up, I am just guessing what my husband thinks but I do feel for him as it affects us in every way (if you get me) he is a little younger than me and although im only 35 im feeling very old :-( I will look into the groups though it would be great to speak to people in the same situation as myself, I just keep thinking if the docs are saying mild only at this stage what will I be like in a few yrs.
    • marieC
      marieC helen.leeson

      Posted

      Well, then you can have knee surgery! I know that sounds glib, but it is a shame that it may have to come to that.  Have you tried ibuprofen gel on the joints?  I was advised that I shouldn't take ibuprofen orally, but have used the gel.  I tried diclofenac? spelling but that left me with a permanently upset stomach.

      Perhaps the patches may be the answer, and although it is morphine, presumably you won't be able to overdose on it.  What does your nurse friend think and has she any suggestions?

    • debbie02705
      debbie02705 marieC

      Posted

      i have just had my 2nd tkr , ive tried all other meds with very little help at all , i ended up trieing the patches of which it is easy to overdose , each patch lasts one week starting at 5mg and working up till you get a dose which helps you , i had to come off the patches because of how they afected me , still working at the time was really strudling with every day to day things ,a feeling of not being in charge of my own body . i changed to mst another form of morphine , after having my first tkr and while still in hospital i was put on another form of morphine ,i very quickly changed back to the mst , what im saying is that although morphine is a strong drug it effects are different with every one , but at the end of the day once you have got to the stage of morphine you need to look towards surgery as the oa will be bone rubbing on bone giving you all the creeks and cracks all of which are gone once the joint has been replaced , i have never looked back on having it done and nowlooking forward to going back to work 
  • marieC
    marieC helen.leeson

    Posted

    Whoops that went before I had finished.

    Carrying on:  ........start a small regular group to keep us going and encourage us. 

    You do need to keep moving though, or it will get worse.  That is one thing that I learnt.  I know it is the last thing you feel like doing, but you will only stiffen up and the joints will hurt more if you don't exercise at all.

    Hopefully you can find someone else in a similar situation and you can help each other by encouragement and ideas on how to organise things to make things easier for you.

  • CelsB
    CelsB helen.leeson

    Posted

    I don't think there is any correlation between the degree of osteoarthrits and the amount of pain experienced.  Some people can have severe wear and tear but not too much pain, and the opposite can also be true - mild wear and tear and severe pain.  I didn't even know I had OA in my spine until it showed up on the x-ray and I only went because of the pain in my hip.  You have my sympathy Helen, znd I hope your GP can sort you out with some medication to help with the pain.  Keep going back and telling him how much pain you are in. x
  • CA-Lynn
    CA-Lynn helen.leeson

    Posted

    Consult with another board ceritified rheumatologist.

    Tramadol is NOT morphine. In fact, Tramadol is a mild SYNTHETIC pain killer with no addictive properties. Go ahead and take it.

  • CA-Lynn
    CA-Lynn helen.leeson

    Posted

    Tramadol is a centrally acting synthetic opiate analgesic (pain relief) medication. Thus it is an opioid and therefore a narcotic. Narcotic refers to opium, opium derivatives, and their semi-synthetic or fully synthetic substitutes. Tramadol contains neither morphine nor codeine, it is fully synthetic, much as methadone is a fully synthetic opioid medication.
    • marieC
      marieC CA-Lynn

      Posted

      I think you got the wrong end of the stick, as Helen isn't saying that Tramadol is morphine, she's saying she's been offered patches instead of the Tramadol.
  • debbie02705
    debbie02705 helen.leeson

    Posted

    mild oa is very painful and can come and go , it shows up on xrays as the bones end up rubbing on the other bones , bone on bone oa is very painfull indeed ,and we all different pain levels what is bad to one may not be to the next person,the question i would be asking is ,have i got oa or ra both very painful and both are treated different , ive just had my 2nd tkr due to oa , my bones were rubbing on each other causing me the pain , little bits of bone floating about around the joint ,now my joints are quite and i wouldnt look back , if this was ra the soft tishue would be inflamed and causing pain and wouldnt nessary need joint replacement  .i only had xrays due to pain in may 2013 so only 15 months later and only 53 years old i have now had both knees done , i didnt have much pain till i was bone on bone ,that does not mean you dont have a lot of pain only that people are all different 
  • hope4cure
    hope4cure helen.leeson

    Posted

    Helen u have every right to moan.

    mild osteo is painful. Usually swelling and loss of tendons to cushion movement means bone on bone rubbing and soft tissue is what can swell and cause more pain.

    They ont call osteo arthritis the wear and tear arthritis for nothin. It's just that. Worn out joints and pain.

    Have u seen a rhumy.. There r many meds available to manage UR pain. DEMARDS have helped me.. UR doc can offer many ither meds available.

  • keveen21
    keveen21 helen.leeson

    Posted

    Is it bone on bone or do you have cartilage left? How about other treatments first - Glucosamine and chondroitin - works for some people. Glucosamine is for the pain and chondroitin might help stop further decay. Helps me.

    Next is diet. Try a detox diet as it is inflammatory pain and sometimes certain foods make it worse.

    Unfortunately we are so individualised these alternative treatments might or might not work. I'm working my way through all of them!

    Of course keeping the joint mobile is key and strengthening your leg muscles. My left leg had lost muscle mass cos I was avoiding using it.

    And of course you need your vitamin D, C and fish oils.

    Turmeric, Cat's Claw etc etc.

     

    • hope4cure
      hope4cure keveen21

      Posted

      The cartridge has worn out. OA is called wear and tear arthritis..once cartilage is gone the cushioning for movement is no longer in place for ease of movement. The pain is from bone on bone...cartilage It can't be replaced once it gone. Kind of like teeth. Once calcium is gone the teeth r subject to easier decay.. confused

       

    • keveen21
      keveen21 hope4cure

      Posted

      I've got wear and tear too - depends how much. Some of those supplements might stop further decay and at least help with inflammation. I also use cold compress method too if I get inflammation. All these self-treatments are on any physiotherapy site. I've just put my DMSO plus arthritis cream mix on my knees! But I know it is that "sharp" pain that is really horrible. Down the line is knee replacement!! I'm hoping they manage to get stem cell cartilage growth treatments before then! Hurry up medical science - too slow!
    • susan67756
      susan67756 hope4cure

      Posted

      I'm not so sure this is strictly true. In fact I'd say it isn't.

      It's accepted by the medical profession that there is no correlation between the level of degenerative changes in joints and symptoms. Some people have completely wrecked joints and no symptoms. Others have very little (or even no) evidence of degenerative changes on x-ray and excruciating pain.

      That suggests that the pain may well be coming from somewhere other than the joint. So whilst regeneration of cartlidge is not possible it IS possible that you could change from being one of the people with wrecked joints and pain to one of the luckier ones with wrecked joints and no symptoms.

      I'm sceptical of most supplements (for anything), but if it works for someone - even if it's placebo then it's good.

      Doctors are too quick to say "you need to live with it". If they were honest they'd say "We don't know enough to help you." or "we don't have time to help you".

      I was diagnosed with mild OA. That was explaned to me as being mild degenerative changes to the joints - and a chiro (don't know whether his opinion could be trusted) later claimed that the state of my joints *shouldn't* be enough to result in symptoms. I didn't have pain as such - just very severely restricted ROM.

      My symptoms turned out to be 100% due to soft tissue imbalances. All treatable. The degenerative changes that were diagnosed as OA 9 years ago? Well, I'm sure the cartledge hasn't regrown any - one would assume that it's got worse. But I run, climb mountains, weightlift (deadlift twice my bodyweight), do martial arts, gymnastics. At 50 I out perform most men half my age let alone women! No pain. Ever. Not even a twinge.

    • hope4cure
      hope4cure susan67756

      Posted

      Wow u got that so right. Doc can't help us .. Sometime that's a good thing sometimes not. UR life was very active and with many outstanding achievements. It's never easy to accept the restrictions and limitations OA forces us into. 

      I have had a difficult time adjusting to barely have a life compared to my previous life . Two hip implants screws in my shoulders and now need knee replacements.. My ankle & wrists r barely holdin on.. Hands totally curled frozen from PSA.time now to build a new life with understanding restrictions don't mean nothing can be achieved. It means it's different. 

      My best alternative is to stay strong do special exercises for OA and swimming to build strength keep muscles strong to support my bones /  joints..new & old and just accept the things I can do & let go of the things I can not. I live with a lot less stress and happier. And some days I'm just out right pissed off too! It's a balance...cheesygrin

      Mild OA is painful. Don't let ur dr minimize ur pain. I take OTC meds to control swelling and for pain. Rest on down days and party on good days.. It's always adjusting to something with this illness ..that's life how I made it this far.. I will just keep it movin..continue to adjust...it's always something!

      good luck confused

    • hope4cure
      hope4cure keveen21

      Posted

      Great job u have a good system. DMSO IS GREAT! Sorry the pain is in UR life .. Arthritis is so mean! Really Mean!redface

      I  too can't wait for stem cell therapy.. Nothing wrong with expecting science to step up to the plate.. Now if health ins. Would cover it I'd be in SWEEDEN In a flash!

      CHEERS biggrin

    • keveen21
      keveen21 susan67756

      Posted

      I think I might have something similkar. What was the treatment in the end?

      "Supplements", ie neutraceuticals do work. There is plenty of evidence on Webmd as a starting point or pubmed.  Recent findings show that just Folic acid plus B6 and B12 can stop brain degeneration. The link between folic acid and the brain has been around for a long long time just that doctors won't use the formulas. There are contradictory findings for Glucosamine.

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