Undiagnosed but in the process....

[Peggys1]

After suddenly becoming ill at 47 years and gathering several consultants of this and that around me, i remain baffled by a body that presents me with new difficulties and wierd and wonderful symptoms. I have been diagnosed with fybromyalgia and am in a lot of pain daily. I have been given Gabapentin which made life -and everyday tasks - possible. However, whilst they significantly help the pain in my back, i suddenly developed hideous nerve pain in my leg and knee. When i had become used to that, my hands and feet became very painful. If i used my hands to grip something, the following day I had pain and severe numbness and great difficulty holding anything for a few days.

Then came days of wheezing and what i thought was an impending chest infection but faded into nothing after a week or so without antibiotics and a couple of weeks ago a small pimple appeared under my arm but developed into a very sore-looking lesion - but it didnt hurt. This was followed by another on the top of my foot, under my arm, in my ear. I have been given 2 weeks of antibiotics and no further sores have appeared during the past week and a half whilst on them.

This is my story so far and I just want to ask you if this rings any bells with you? Does it sound like lupus to you, the experts? Donna

[23_molly]

Donna, Though I have no experience with skin lesions like yours, your pain progression is just like mine. Finally diagnosed with Fibro after 15 years, I have just received a new Dx of RA, 15 years after learning I have Fibro. Until recently all I had was soft tissue pain. Then as if overnight my hands, feet, and knees felt aflame with pain--a classic presentation of RA. For 10 weeks I've been taking hydroxychloroquine. Now on my second generic, I feel better than I have in years. Best wishes to you. --molly

[Peggys1 in reply to 23_molly]

Thanks Molly. Its been a long haul for you. I got 'sick' at 47 and i'll be 55 this month. Time flies...!

[23_molly in reply to Peggys1]

Thank YOY! Yes, the gift of a lifetime that keeps on giving. I'n 67 and seem to get a new Dx annually. IBS, anemia, Hashi's, Sjogren's, Raynaud's.... still UCTD/MCTD, though. Between us, I think yours looks like Discoid Lupus, but would not stake $/£ on it. Great good luck to you. --molly

[Paul_Howard Partner LUPUS UK]

Where are you currently at with your journey towards a diagnosis? Have you been tested for lupus?

[Peggys1]

Sorry Paul part 2! ...

They are not helped by Gabapentin.

I have days when I'm just bone weary and dont care very much about anything and days when I'm joyfully productive. These sores (lesions?) Appeared one after the other, under my arm, my ear, the top of my foot and under my chin a few weeks ago and since then I've kept checking my temperature, feeling as if I have flu, more intense nausea and this unexplained respiratory issue. I went to the GP and he said that, together, the symptoms didnt suggest anything to him and he couldnt explain them. I suggested Lupus and he said all he knew about Lupus was the butterfly rash but I was called in to the surgery because the thorassic consultant had written to them to say that one of his tests showed that I had raised glucose levels so I had been asked to come in to the surgery to do a fasting blood test.

Does any of this suggest anything to you guys?

[Paul_Howard Partner LUPUS UK in reply to Peggys1]

We're not able to say whether it may be lupus causing your symptoms or something else. From what you describe you are experiencing symptoms affecting multiple systems in your body, so you should at least be tested.

Have they done any blood tests for lupus?

[Peggys1]

Part 1 of my reply seems to have disappeared. Apologies.

Paul, i have had muscle pain, particularly painful spasms in my lower back, 'locking' elbow joints, severe neuropathy in my arms to the extent that I have now completely lost any feeling in most of my fingers and, if I have to use my hands in a grasping movement, I will lose any feeling in my hands - for a few days after. My GP sent me to a neurologist basically to 'rule out' diseases like Parlinsons (i did have tremors) , MS etc He concluded that I did not have a life threatening degenerative disease but diagnosed FM and arthritis he prescribed Gabapentin and it really helped with the excruciating back pain and therefore allowef me to become more active.

Just as things were looking up i began to have knee problems, particularly bad in my right knee which involved burning pain on the surface of the skin as well as in the joint itself. If i had pushed my luck and been more active than my body could handle, the pain would shoot from my hip through my knee to my ankle and was very distressing. Shortly after I noticed all my joints joining in - creaking and cracking like old cog wheels. My hearing is significantly reduced and.joy of joys, I suffer from excessive sweating which, in seconds, leaves me with sheets of water pouring down my face from my scalp. A shop assistant asked me brightly if it was raining heavily one day when she looked at my soaked hair and face. "Yes", I muttered and shuffled off feeling utterly humiliated and very sorry for myself!

Then the lesions came.

My GP thinks I should be grateful that i havent been diagnosed with a degenerating disease and just stop trying to solve the puzzle. But i want to know whats wrong - not what isnt wrong.

When your body behaves in a way that you cant understand you have to take responsibility and try to help yourself, dont you?

Let me know if any of this is familiar to you?

Donna

[Purpletop]

Looks like discoid lupus to me - get the go to send you to a dermatologist ASAP for a biopsy, to avoid scarring if it is discoid. If it isn't, at least the dermatologist could tell you what it is.

About the neuro symptoms, are they sure that it isn't Parkinson's? Have you had a SPECT scan? Only the reduction in hearing is a bit suspect.

[Peggys1]

Neuro was very sure purpletop but we'll see....!

Thank you for your reply. How are you?