Greetings from Adelaide, Australia

Eva1942

New member
Joined
Aug 6, 2021
Messages
4
Hi everyone,

I’m Eva (not my real name) and I’m from Adelaide, South Australia. I was diagnosed with Fibromyalgia in 2012 after spending a year being wiped out. I was in remission from 2017-2019 but now, it’s come back with a vengeance.

I’m one of those Fibro sufferers who find the fatigue more debilitating than the pain. I had a lot of reactions to the medications you usually take with Fibro which lead me to being allergic to ALL NSAIDs excluding Panadol or Morphine, which has led me to many days where I’ve pushed through pain and paid for it with days of inactivity. Now, I find myself more or less being able to manage 3 full days of work but on my days off, I spend it recovering, which makes my other household errands suffer.

I originally found this forum while looking for whether many Fibro sufferers use wheelchairs part time as I also have lower lumbar scoliosis (of 10 degrees) which also causes numbness/ paralysis of my right leg.

Hope to contribute more soon,
Eva
 

Dooi

Moderator
Joined
Feb 4, 2013
Messages
182
Reason
DX FIBRO
Diagnosis
06/2012
Country
CA
Hi Eva, welcome.

I was curious if your medical allergies to NSAIDs coincided with your drastic onset of symptoms in 2017 when you went off them, or whether it was unrelated?
 

Eva1942

New member
Joined
Aug 6, 2021
Messages
4
Hi Eva, welcome.

I was curious if your medical allergies to NSAIDs coincided with your drastic onset of symptoms in 2017 when you went off them, or whether it was unrelated?
Hi!

Being honest with you, I really don’t know. I’d like to suspect it was to do with how they interacted with my body itself. I’d get horrible sickness - vomiting, nausea and it would contribute to my Fibromyalgia more in terms of fatigue and pain. But I guess I will never know how I became allergic to all NSAIDs. I take a more holistic approach now, but sometimes it doesn’t always work.

In the past year I have become suspicious that it’s not Fibromyalgia I have, but FND, MS or something else, as some new symptoms are not within the Fibromyalgia criteria. Though the Rheumy who diagnosed me had a speciality in Fibromyalgia, and admitted to me some years later (which I think was a slip of the tongue on her part), that she suspected I had something other than Fibromyalgia.

Now, I’m considering the possibility of becoming a ambulatory wheelchair user and I hope it helps me to regain the independence I feel is lost when I recover on my days off.

Eva
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi Eva,

Goodness, it sounds like you're having a really hard time - I'm so sorry you're having such a battle and that your remission didn't last. I've also experienced some horrible reactions to various medications - duloxetine created a pretty much identical reaction to the one you describe above, and then a sting in the tail of nasty withdrawal. More layers of being so unwell on top of chronic illness is the last thing any of us need! I did spot - and it might be useful for you to note if you ever need it - that morphine is not an NSAID, but rather an Opioid. Perhaps handy if you're ever taken to hospital with an injury.

Have you got a good doctor who can go through some further investigation with you? If your instinct is that there's something more going on, then I think it's always wise to follow that thread. I imagine there's the possibility of co-occuring CFS too, although obviously I'm no expert and don't know your other symptoms - I'm sure you've done your research! I truly hope you find the answers that you need. If using a wheelchair allows you to reclaim autonomy, then I think that's a really positive thing to do.

Happy that you're here 🌷 Will look forward to hearing more from you!
 
Last edited:

Eva1942

New member
Joined
Aug 6, 2021
Messages
4
Hi Eva,

Goodness, it sounds like you're having a really hard time - I'm so sorry you're having such a battle and that your remission didn't last. I've also experienced some horrible reactions to various medications - duloxetine created a pretty much identical reaction to the one you describe above, and then a sting in the tail of nasty withdrawal. More layers of being so unwell on top of chronic illness is the last thing any of us need! I did spot - and it might be useful for you to note if you ever need it - that morphine is not an NSAID, but rather an Opioid. Perhaps handy if you're ever taken to hospital with an injury.

Have you got a good doctor who can go through some further investigation with you? If your instinct is that there's something more going on, then I think it's always wise to follow that thread. I imagine there's the possibility of co-occuring CFS too, although obviously I'm no expert and don't know your other symptoms - I'm sure you've done your research! I truly hope you find the answers that you need. If using a wheelchair allows you to reclaim autonomy, then I think that's a really positive thing to do.

Happy that you're here 🌷 Will look forward to hearing more from you!

Thank you for the warm welcome :)

My husband has Ankylosing Spondylitis as well, so I’m familiar with duloxetine. So sorry you had to experience those reactions too. They were awful. The antidepressant I was on (Lexapro) also caused suicidal tendencies too. Horrible times 😔

Yes, I realise that morphine is a Opioid, but I had a bit of brain fog when I was writing my original post. Ugh. I was on Tramedol too, both quick and long. Celebrex too - the highest dose there was twice a day.

I have just moved suburbs, but the doctor I have found seemed to be though when I mentioned that I have ‘episodes’ resembling seizures, but a bit dismissive when I mentioned my Fibro. I suspect I have FND or early MS along with my FM, as most of symptoms point to one of these two. A friend of mine who has ME has suggested that I look into getting tested for EDS as well, and wondered why I did not take these actions sooner.

Becuase I’m not eligible for NDIS here in Australia, the wheelchair cost will be out of my own pocket. I can’t use the standard wheelchairs so I will need a custom wheelchair. I have a budget of $2000. I have my eye on a chair, but let’s see how we go..

Eva
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Oh my, ankylosing spondylitis is also a very challenging thing to navigate. A close friend of mine just had spinal surgery to get rid of a spur that was stopping him walking. Thanks to the wonders of modern medicine, he's just about good as new now! I suppose the silver lining is that you and your husband must both be able to empathise deeply with the other's difficulties, and can mutually support without judgement. Iwish him well too.

It sounds like you're steadily making your way down the chronic illness detective path. As for taking actions or exploring ideas sooner, there is just so much to take in! I think progressing at our own pace is the best any of us can do. I hope your doctor drops that dismissiveness and gets on board with helping you sleuth for the answers you need.

Good luck with the chair!
 

Eva1942

New member
Joined
Aug 6, 2021
Messages
4
Oh my, ankylosing spondylitis is also a very challenging thing to navigate. A close friend of mine just had spinal surgery to get rid of a spur that was stopping him walking. Thanks to the wonders of modern medicine, he's just about good as new now! I suppose the silver lining is that you and your husband must both be able to empathise deeply with the other's difficulties, and can mutually support without judgement. Iwish him well too.

It sounds like you're steadily making your way down the chronic illness detective path. As for taking actions or exploring ideas sooner, there is just so much to take in! I think progressing at our own pace is the best any of us can do. I hope your doctor drops that dismissiveness and gets on board with helping you sleuth for the answers you need.

Good luck with the chair!

My husband and I usually like two dragons some days! LOL :ROFLMAO:

I have the neurologist tommorrow. Well see how that goes. I’m more excited for the wheelchair trial, as it’s something I should have done a long time ago!

Eva x
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
My husband and I usually like two dragons some days! LOL :ROFLMAO:

I have the neurologist tommorrow. Well see how that goes. I’m more excited for the wheelchair trial, as it’s something I should have done a long time ago!

Eva x
Good luck! ✨✨✨
 
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