A doctor has finally listened - but has suggested something other than lupus

[SadGirlRaceClub]

Some of you may remember a few weeks ago my post about numerous GP/Rheum not listening, this is an update in my journey.

Following the instructions of the GP - I rang back to get a repeat prescription on my 2x500 a day Naproxen I was taking for joint pain and swelling in my knee.

I got through to a new GP i’ve never spoken to before and because of this she wanted me to describe my pain to her before she repeated my prescription. After I told her all of my symptoms and explained my pain, She decided not to repeat my prescription and suggested that actually if two rheumatologists have infact said I don’t have any joint issues, maybe the issues isn’t lupus and maybe my pain is neuropathic.

She has now started me on 10mg of Amitriptyline to be increased to 30mg over the next four weeks and then have a review.

I accepted that maybe we should go down a different route to treat my pain if what I was on wasnt working - but i’m apprehensive of ruling out joint issues when no actual recent MRI/Xrays have been done on my problem joints.

She suggested that maybe if the treatment seems to be working we could be looking at the possibility of Fibro or even MS.

I don’t know how to feel about this prognosis? Has anyone else had similar experiences ? I know symptoms of Lupus/RA/Fibro/MS all have overlapping symptoms

Any insight would be appreciated.

[KayHimm]

Yes, after years of a diagnosis of connective tissue disease, a new neurologist wondered if my doctors had ever considered MS with me. You are right. There is overlap in symptoms and a specialist or a new GP can hear things in a different way.

This doctor sounds wise to consider other possibilities. The brain and nerves cause pain in ways that I don’t understand. But good for her for thinking outside the box. There are lots of us here with problems of the nervous system, so we can try to help.

If you aren’t comfortable about not having tests on your knee, ask the GP what imaging would be best to detect inflammation in the joints. I believe people here with lupus arthritis have had ultrasound to confirm arthritis. They might pop in to share experiences.

Good luck and hope treatment works.

XK

[jimbo1605]

I am pleased you are making progress although its slow.

Amitrip is very effective at neurological pain but has a big side effect; It makes most people drowsy and sleepy. It also masks the possible underlying cause of the pain which could be any of the conditions you have identified and a few more besides.

Why did your doctors say you dont have joint issues ? What did your bloods show up?

I suggest amitrip may give some relief short term but I doubt its the answer.

[MrsMarigold]

Hi SG. Glad for update. It took decades for me to get a diagnosis and yes the overlapping disease symptoms make it difficult. I had a lumbar puncture and MRI of brain and spine and way too much bloodTesting/ all necessary. I have a spinal issue which makes it trickier. You are on a better path. I think people here are telling you that and yes yes yes. Most folks with AI diseases

Do not get an immediate diagnosis for one of the reasons you stated. They can imitate each other. Hoping for pain relief and doctors with inquiring minds. x Titters

[KayHimm in reply to MrsMarigold]

“Inquiring minds” exactly 😀

[Broseley]

Request an XRay which will rule out (or in) osteoarthritis. An MRI was done on my hip after that which showed it was inflammation only. You could request that, though with a knee, ultrasound should do.

[Roarah]

Taken at night amitriptyline’s side effects are lessened greatly. I took amitriptyline for migraine treatment a long time back while waiting for a neurologist to treat me. I felt great on it and had the best sleep of my life. My gp only gave me a two month script and the neurologist gave me a different SSRI to treat my MA. I preferred the amitriptyline to be honest and ended up stopping the SSRI treatment altogether.

I hope it helps you.

[barb5819]

HI SAD GIRL. THIS IS GOING TO BE A LONG POST. wELL MAYBE NOT KEYBOARD IS OOUUTT OF SORTS. THINK WWILL CLLLEAN AND GET BACK TO U. SORRY

[Roarah]

The dose prescribe is too low to be used as an antidepressant but has been shown to help with neurological pain very successfully. Low dose amitriptyline is also a successful treatment for gastrointestinal disorders as well.