TheLupusSite.com banner

1 - 4 of 4 Posts

·
Registered
Joined
·
35 Posts
Discussion Starter #1
Hiya all,

Thought would post as not done for a while. Im back at rheumy this thursday 14th may (cant wait) ! this my 3 month appointment. Been on Plaquenil almost 3 months, cant report much difference. My face not burning as much, still odd "flash" and more noticeable if I get worked up or stressful event it just literally comes on, anyone else had that instant response ????
Docs gave me co-codamol, now on top dose 2 tabs in 24-hours, no more than 8 a day. Slightly takes edge off pain, but nothing much. Strangely, when had painkillers, I then feel very sorely "bruised" when they wear off feel in agony. STILL, its ongoing, having bad sleep, waking up in night PARALYSED cant turn over, unless "launch" myself. When wake up OMG - horrendous. Feel in pain, takes atleast 2-hours to feel less sore (but sore CONSTANTLY EVERY MINUTE OF MY LIFE).
I work full-time (37-hours mon-friday). Am very concerned about work, this now my 6th week on sicknote. Have only another week off, but really dont intend returning yet. Hubby said well ..................... "hope they dont sack you", I know my rights, and have valid reason with doctors medical certificates, so dont feel I should be worrying, any help on that one PLEASE ??????
ALSO, my ribcage makes horrendous "cracking" noises, everytime I breath, and even when I move, my neck does that and it frightens me with shock. This is everyday of my life.
Feels totally awful at present, feel bit bored cos not in office, but then I feel no-way up to even considering going back til I feel in a better "state of play".

Any valuable, support, serious help and answers welcomed ! LOL

Hugs, take care,

Diane (Di) X PS, hosp think more than likely LUPUS, have FIBRO 21 years, Reynauds and arethemia or some word ! of skin
 

·
Registered
Joined
·
416 Posts
Hi Diane,

I have had all of your symptoms, including the "flash" you describe and being unable to turn myself over in bed, etc. I was prescribed low dose clonazepam before bed which addressed the horrible pain and muscles contracting and locking up in bed at night. I took it for several years with complete success, along with low dose amiltriptyline, but then I developed heart problems which they couldn't find a cause for so it was down to side effects of the meds. I stopped the meds, heart problems stopped, but then I went into benzodiazepine withdrawal. I am now on gabapentin which helps lessen the muscle contractions and spasms as well as the flashes. Both drugs affect the level of GABA in the brain, the chemical that quiets the system. I recommend you talk to your doctor about trying one of these drugs.

Barb
 

·
Moderator
Joined
·
4,430 Posts
Hiya, just wanted to wish you well for your up and coming appointment.. I am in month 5 of taking plaq, think it is helping but very difficult to know definitely!! Can't help much with the rest of your post, just wanted to wish you well.
Claire X
 

·
Registered
Joined
·
279 Posts
Hi

I can relate 2 u on the pain side.:eek: Even breathing hurt, to take a deep breath was agony so I didnt. The crack. My hubby could hear my lungs crackling also a pop. weird or what. Finally sorted with meds. Doesnt hurt to breath now and I dont notice every breath I take.

Tc good luck on the 14th Im i=I on the 13th 4 Retuximab and clinic

dixy
 
1 - 4 of 4 Posts
Top