Advice on coping with constant pain

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i have been having test, after test, after test now for over six years.  Yes SIX years.  This is due to what the consultants refer to as false positive and false negative results.  Many of these are contradictory and need doing again and again.  They keep telling me I DEFINITELY have the condition, they just have to prove it, and find out why!  

So so far both a CAT scan and an MRI have ruled out the pituitary gland.  A CAT scan indicated a nodule on BOTH. Adrenal glands, and venous blood taken in the radiology dept (forget the procedures name) indicate that BOTH these nodules are 'pumping out' almost the same amount of excess hormone! It has even been suggested that there may be a 'hidden' nodule somewhere in my chest cavity.  Very rare apparently and almost impossible to detect.  So more bloods, yada yada.

i could almost put up with all the back and forth, the various blood tests and so on.  But what is really driving me nuts is the virtually constant pains in my upper arms and thighs.  There is just no respite.

as for sleep!  Well, I wait until the pain has reduced to a dull ache, and grab a few hours, until it wakes me again.  I find myself moving from chair, to bed to chair.  Juggling three different pain killers, and calling upon my son to rub analgaesic gel into my back, or even, sometimes simply administering a gentle massage up and down my back.  Which has become so very tender I can feel every bone!

do others experience this pain? And if so, how do they cope?

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6 Replies

  • Posted

    I'm new to it all so don't have much input just wanted to send my love & hugs & hope you feel better soon... 

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  • Posted

    Dear Elizabeth

    I know the frustration you are going through, as it took them nine years to diagnose me, I am the first person in the U.S. to be diagnosed with "cyclic" Cushing' s.

    My first pituitary surgery was back in 1989. I had a LONG list of symptoms . Believe me when I say the doctors have learned nothing from what I went through...

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  • Posted

    Hi Elizabeth, 

    When you say pain in your hips, do

    you mean a stinging pain? The sides of my outer thighs have been stinging and feel stiff when I get up. I don't know if it's from Cushings or something else. 

    Thanks. 

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    • Posted

      I find it difficult to describe this pain to be honest.  It is more of a burning pain, but at the same time the sensation is as if the muscle fibres are vibrating.  Really really odd sensation.  I find that simply flexing my leg seems to make a difference, but am unsure whether it is the actual leg movement that is making the difference, or simply that by concentrating on keeping the movement going it is distracting me from acknowledging the pain.
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  • Posted

    Hi I have currently been going under tests for Cushings , it started with me periodic shooting pains and weakness in arms and legs but in the past year literally the pain particularly deep in thigh muscles has gotten  pretty constant along with this is restless legs particularly at night which is sometimes unbearable . It's like a deep muscular pain and feels like a really deep muscle massage is needed . Weirdly it feels like the muscles are eating themselves . I know where your coming from i still have nothing definitive in diagnosis yet either as labs are inconsistent and is very frustrating I don't want it to get to the point I can't hold myself up 7 years and I still have no definite answers it is unbelievably frustrating. It must be sooooo frustrating them telling u you have it yet you can't get treatment yet mannnn this disease is venom ! I give you big hugs and pray you will get treatment soon . As for the legs I'm gonna try deep heat . X

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    • Posted

      I have found that the tablet DF118, or dihidrocodeine worked on my legs, I also use ibuprofen gel on the small of my back, and between my shoulder blades, and now as a sort of finale, just before sleep I take two Paramol, or two paracetamol +  half a dihidrocodeinne.  Really knocks the pain enough to get to sleep.

      apparently everyone's tests fluctuate somewhat, which is why it is so difficult to diagnose.  My problem is that we now know for definite that I have it, we even know the excess Cortisol is being pumped out by my adrenals, what we don't know is why?

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