Doctors won't listen and only rely on tests

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I've been trying to find an answer to my pain for over six years. The first rheumatologist said I had moderate osteoarthritis in hips, hands and right SI as well as a possible inflammatory type of arthitis or connective tissue disease. He offered Methotrexate and Biologics but I was not ready for that without a clear diagnosis. I tried various NSAIDS without any real improvement. Over the years I saw 4 more rheumatologists who thought the osteoarthritis was mild despite my pain. Most of them sent me on my way with nothing, but one put me on NSAIDs again. Still no improvement. One of them did offer PT but my insurance at the time didn't cover it so I couldn't afford to do it. Up until this year the pain has been intermittent and tolerable, but in the last few months it has increased and is almost constant. There's also new joints involved. I've found yet another rheumatologist who has run all the blood tests again (all normal) and did some x rays but failed to do any of my hips and feet even though those areas are the most painful. She says it's just the beginning of osteoarthritis and prescribed Celebrex. That drug didn't do much for me back in 2014. So here I am barely able to get through a work day, can't stand or sit more than 10 minutes without pain, have difficulty walking uphill/stairs, and have extreme stiffness and pain from the waist down when standing up from sitting. How can any of this be normal and "mild"?

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12 Replies

  • Posted

    Has anyone suggested polymyalgia rheumatica?  Are you having difficulty doing simple things like getting out of bed, or standing up from a chair after being seated for a few minutes?

    http://patient.info/health/polymyalgia-rheumatica-leaflet

    • Posted

      No they haven't suggested that. Actually I haven't slept in an actual bed for over five years. If I try I wake up multiple times with pain and I don't sleep deeply at all. The only thing I can sleep in is a Brazillian hammock. I have extreme difficulty getting out of a chair, especially if it is low. I have to hold onto something until I can stand up straight and walk. Everything hurts and if very stiff from my pelvis to my feet.

    • Posted

      I've read about polymyalgia rheumatica and it doesn't sound like what I'm experiencing. While I do have lots of muscle pain and stiffness, the main problems are definitely at the joints. I get the stabbing groin pain and big toe pain if I move too suddenly, and the burning stiffness in my knees when I squat down. Even my hands that have had very little OA symptoms for years have now begun to hurt horribly after I have been holding something for any length of time.I just don't understand why OA would suddenly start geting worse as that is usually a gradual progression. I also have had periphrial neuropathy for a number of years and that has been increasing too.

      .

    • Posted

      You certainly need to be investigated further, I don't think you should be left to suffer like this.  PMR does cause pain in muscles AND joints.  It's a very idiosyncratic disease and manifests itself differently in different people.  Often overlooked by doctors, especially if the patient is under 60. There is a very simple diagnostic tool, which is to take a moderate dose of prednisone (prednisolone in UK) about 15-20mg, no more, and if the pain is relieved by 70% or more within a few days (for some people it's hours, in my case it was three days, for others closer to the full week of the trial) then the chances it's PMR are good.  It's treated by staying on the steroid med as long as it takes, but weaning down to the dose which manages the pain well so any side effects are minimal.  If it has no effect on the pain, then the pred is just stopped, and more investigation has to be done to find out the cause of the pain.

      On the other hand, some people who are initially dagnosed with PMR are later rediagnosed, sometimes with late onset rheumatoid arthritis.

      I see you are in the US.  II believe if you google US arthritis helpline you will find contact information for a helpline which was launched in 2016.  They my be able to assist you.

      All the best.

  • Posted

    Have you been to see a surgeon, they will take an X-ray and from that they can usually tell how bad the OE is because you can clearly see the erosion in the joints. My surgeon has done various things for me like recommending drugs, steroid injections into the joint and his most recent suggestion is kinselogoy tape to protect my joint. 

    When the pian gets too bad or the joint gets gets stiff he then replaces the joint for me nad I am pain free. Hence I am. A huge fan of joint replacements. I need a third on my finger and we are using the k tape to see if the joint will last another year or so before surgery is needed.

    i would go see. A surgeon and get an X-ray. If you are in the US I feel sorry for you because your hospital and doctors charge stupid money. Time to be a health tourist and come to the uk and be a private patient e.g. You can get a hip done here for about $20k all in. 

    • Posted

      I haven't seen a surgeon, just rheumatologists. All but one have taken hip x rays while lying down. It's my understanding that sometimes OA can be missed in that position and weight bearing ( standing) x rays are needed. But I can't very well tell the x ray technician what to do! The current doctor never even took hip x rays, even though I keep insisting most of the pain is there!

    • Posted

      It's not a case of being missed, it's not visual. I ha dot have an MRI on my finger which clearly showed the OE when rotated, but a flat image doesn't show it.

      here in the UK your GP would refer you to a surgeon rather than a rheumatologist if they suspect OE or joint trouble. 

      You also mention you have it in your hands, they can X-ray that. Here the surgeon tells the radiographer the X-rays they require so you don't need to get involved 

    • Posted

      Here in the US you generally only see a surgeon when you are referred for surgery. It's also a problem that many places only do supine x rays; standing x rays are not offered at all.

    • Posted

      I don't get that, so who sends you to the surgeon, your gp?

      Our surgeons view surgery as a last resort and offer many other treatments before surgery. Have you spoken with a surgeon to see if that is the case also and you are not just assuming that they only do surgery.

      Which part of you hurts most, if it's your hands they are easy to X-ray

    • Posted

      A gp or other specialist generally sends you to a surgeon. It would be unusual to see one on your own. The GP or specialist handles your care until you need surgery.

      My hips and feet are the worse at the moment, but xrays weren't even ordered for them this time. My hands were xrayed but it was reported that there were no significant degenerative changes, even with the very visible Herberden and Bouchard nodes on every finger! 

    • Posted

      A GP doesn't look after you until you need surgery. My GP sent me to a hand surgeon 8 years ago. For the first 3 years my surgeon used other treatments before I had my first surgery. He is now my primary cater for my condition and has been treating me with non surgical methods as he hopes he can delay surgery for another 1-2 years.

      the reason you go to see a consultant is they are the experts in that field your GP is not. 

    • Posted

      A rheumatologist is suppossed to be an expert in the field also.

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