help: my diagnosis of sle seems to have... - Fibromyalgia Acti...

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moss profile image
moss
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my diagnosis of sle seems to have swayed towards fibro after 10 years. my rheumy has told me to take pregabalin. what does do others take ? can i also ask a few other questions- is a sore throat with croaky voice common in fibro ? if so why ? i have also been told to stay on my oral steroids but i dont understand why-i did not think they were used in fibro

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moss
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11 Replies

Hello Moss, thank you for your message. Not sure what sle is other than sleep apnea. It's always best to get a diagnosis and then we can try to come to terms with it, sort out our meds etc., so it's good that at last you have your diagnosis and hopefully can move forward in the right direction. As each case tends to be different with Fibro, we all take different meds, not all of us take the same thing eg. Pregabalin also known as Lyrica. Lyrica (Pregabalin) is a drug treatment for neuropathic pain, shingles, Fibromyalgia, seizures, and pain management. Some of us take antidepressants which tend to have a relaxant effect, helping to induce sleep or relax painful muscles etc. I take Amitriptyline which is listed as an antidepressant, it helps me sleep and rest. I also take painkillers, namely Solpadol. We all take lots of different kinds of pain relief, again each case tends to be different. It's always best to discuss your symptoms fully with either your GP or your Consultant so you get prescribed the best type of meds for those symptoms.

You mention a sore throat, croaky voice etc. I have this and I know others do too. It's not uncommon with Fibromyalgia to have this. I find my swallowing is a bit exaggerated first thing in the morning and eases as the day goes on. It doesn't stop me eating or drinking though. It's important if you've been told to keep taking certain meds that you do this, don't reduce, increase or stop any meds without consulting your GP. I can't comment on why you take oral steroids, it's best to ask your GP to clarify this. They can sometimes be taken for muscle and joint pains, for autoimmune conditions. When people may have other underlying conditions, of course they will then take other meds. It's always best to check if there's something you aren't sure about. Wishing you all the best, I hope things settle down for you very soon. It's good to have you here with us. :) :)

in reply to

Forgot to say, if you look to the right >>>>>>> you will see tags. If you look through these there is info on various meds etc., I am sure you will find the info very informative. :) :)

Rach1977 profile image
Rach1977

Hi,

Pregabalin is one of the first drugs a Dr will start you on for Fibro. It will work on and with your nerves and pain. I have been on similar drugs, however you will just have to take the trial and error approach. No one person is the same as the next. It is good to research what drugs you are on and look at how they help you.

I would think you have been told to stay on steroids as you should not come off them immediately, you have to come off them gradually. I may be wrong, just ask your Dr if you are confused.

Re the sore throat, yes it is common,

in reply toRach1977

Hi Rach, Gentle hugs.

I was diagnosed with Fibro and PTSD 7 years ago though have had Fibro 38 years. all I was given when Mr Fibro was caught in the act well and truly was 30/500 Co-Codamol 3 x 2 a day - an extra 2 if pain really got bad. It's only out of desperation that 2 months ago I was also given Pregabalin. Such a difference - though not full relief - it's better now pain-wise than pre-Pregabalin!

Love,

Carol xx

moss profile image
moss

thank you all. for 10 plus years the rheumy treated me for mild systemic lupus. then i developed 2 ndry fibro four years ago. but after seeing the rheumy this week he feel s my symptoms are more fibro than lupus. i have been told to stop my antimalarias ,but to stay on steroids -which has confused me. he also told me not to take anymore antiniotics for sore throat or sinus

Hey Moss, gentle hugs.

I take Pregabalin and find they do make a difference to the pain - though I do have Co-Codamol as well. And yes, sore throats seem to come with Mr Fibro as well!

Love,

Carol xx

I personally have never been prescribed Pregabalin (Lyrica), I was started on anti-malaria meds at the beginning namely Hydroxychloroquine in the hope that it would reduce the inflammation and lessen my pain. This didn't work at all and made me feel very spaced out, so then I was put on other meds. As Rachel says it's trial and error, it helps to know and understand what you are taking and why. We are all different and sometimes so are our meds. :) :)

Rach1977 profile image
Rach1977 in reply to

....Fibro isn't an inflammatory illness though...or did you mean you took them for something else?

moss profile image
moss

yes i to was on pleqnil but have just been told to stop taking them

moss profile image
moss

yes i have dryness throughout my body. i have had my eye s checked and they are dry. my bloods are all non remarkable and always have been but rheumy has always hovered with a connective tissue/sle diagnosis. maybe because my symptoms recently have beeen more fibro that is why he s changed his mid and gone for the fibro diagnosis and henbce stopped pleqnil and started pregab

tissy1964 profile image
tissy1964

hi,im on pregabalin,and at first it work wonders.

i was riding my horses,galloping and jumping,working 2hrs aday cleaning too.

but now im getting swelling in myh hands and feet,very painful,im told i gota pace my self,yet the dole want me to work more hours,my doc is useless,so im going back to pain clinic to get mors help with the pains,my figtique is worse but i push to get through my days.much gently hugs,xx

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