New to the forum but not to Fibro

corrseye

New member
Joined
Mar 23, 2018
Messages
2
Reason
DX FIBRO
Diagnosis
04/2010
Country
UK
State
Tyne and Wear
Hi everyone.

My name in Nic, I'm 45 and live in the North East of England with my Mam and my dog. I used to live on my own, but became unable to manage and had a few safety near-misses as I became ill, so I moved in with my Mam who is simply wonderful. I honestly don't know what I'd have done this last decade without her! Fortunately we've always been close and very rarely have any disagreements, so it's an arrangement that works well. It sounds cliché, but my Mam is also my best friend, and has been for all of my adult life.

I've suffered from Fibromyalgia since 2010 - like many others, it developed within a year of becoming ill with M.E. (the life-long parting 'gift' from infection with Swine Flu). Pre-illness I used to be a healthy, lively, energetic teacher (primary age special needs - mainly little ones with a diagnosis of severe learning difficulties and/or autism). Illness forced me into retirement at the age of 36 - and 9 years on, I still miss working but I'm simply nowhere near well enough to even volunteer for an hour a week (I tried this, but was the result was a decline in health).

After a 2 year phase (from becoming ill) quite dramatic decline in health, things seemed to stabilise to a point I was able to adapt and manage to have some kind of life. I was assessed as having moderate-severe M.E. with significant fibromyalgia as a comorbidity. Within the first 4-6 months of illness, my mobility became impacted -a combination of severe pain, muscle twitching/jerking, progressive weakness in joints - and I was faced with a choice of embracing mobility aids or accept the help of strangers picking me up from the floor of the supermarket (where I ended up on the rare occasions I had managed to get there). I now use elbow crutches for very short distances and an electric wheelchair for anything beyond a 100m distance (or 50m there & back). The wheelchair (named 'Bertha' by all my family) has enabled me to enjoy rare days out with family, and I even took it to Rome in 2014. I don't see it as a symbol of disability, but rather a tool that has enabled me to partake in everyday outings, albeit very rarely these days.

In 2015 life brought me a new challenge - I was diagnosed with an aggressive form of Non Hodgkin's Lymphoma. Thankfully, thanks to a wonderful haematology consultant, together with many fantastic doctors and nurses at 2 local hospitals, I was treated for this successfully with intensive chemotherapy and radiotherapy. I have been in remission since August 2016. My chemotherapy was made up from 6 different drugs - several of which are pretty nasty and definitely left their mark. One of the drugs was called Rituximab, and this works on the immune system. I believe it was thanks to this particular drug that for the duration of my chemo (& a few months after), I actually felt better than I had since becoming ill with M.E & Fibro. It effectively put the M.E. part of my illness into a temporary remission. Unfortunately, some of the other chemotherapy drugs had the opposite effect on the Fibromyalgia pain - it steadily increased with each treatment, and I developed peripheral neuralgia (sharp tingling mixed with a weird numbness of the hands and feet) as well. This effect was not temporary and the pain has steadily continued to worsen since that time until presently. Since 2017, the M.E. part of my illness has also worsened significantly, to the point I am now bed bound for at least 70% of the time. I believe this decline is a direct result of damage to my body from such a strong chemotherapy regime.

To be honest, these past 3 years have been tough, and this last year in particular (pandemic and lockdown aside) has left me struggling to cope for much of it. I hope, in joining this forum, to be able to connect with others who understand the challenges of living in constant pain. Most of all, I hope to be able to beg suggestions of things that have been helpful, and hopefully will be able to help others in the process of finding some support for myself.

So, that's me! Hope to be joining in some discussions really soon.
 
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RLG

Active member
Joined
Aug 2, 2020
Messages
65
Reason
DX FIBRO
Diagnosis
07/2020
Country
US
State
MI
I've suffered from Fibromyalgia since 2010 - like many others, it developed within a year of becoming ill with M.E. (the life-long parting 'gift' from infection with Swine Flu).

Hello corrseye! I am new here, as well. Your story made my eyes prickle with tears. What a warrior you must be! So many challenges to overcome--so many at one time. And a Special Needs teacher, too.

My issues began very young, but I can relate to having things crumble so badly after a killer flu (mine was H1N1). Were you hospitalized, intubated? What prescriptions and treatments were you given? I am so suspicious about the long term after effects of the treatments. We know they are to save our lives, but they also contribute to their own health effects. Antibiotics, opiates, massive high doses of steroids, etc. Not to mention the latent viral load in our cells the infection leaves behind.

Thinking healing thoughts for you, and admire your strength!
 

corrseye

New member
Joined
Mar 23, 2018
Messages
2
Reason
DX FIBRO
Diagnosis
04/2010
Country
UK
State
Tyne and Wear
Hi RLG!

Ironically, I only had relatively mild symptoms from Swine Flu and was just treated at home with Tamiflu, but it obviously sent my immune system into overdrive to leave me with M.E. & Fibro.

As to medications, I've been on all kinds over the years - initially it was Gabapentin and Tramadol, then I was given Amitriptyline - which didn't agree with me at all. As time went on I had Sodium Valproate and Duloxetine added to the list, and when my body became too accommodated to the Tramadol, this was changed to Zomorph (slow release morphine) with Oramorph for breakthrough pain. Unfortunately, as my health has deteriorated so badly, and this has had a major impact on my sleep (often sleeping for 18+ hours a day for weeks on end at times - at other times I have really bad insomnia), managing any medication that requires regular doses throughout the day became impossible. As a result, my GP stopped all but the Oramorph and Duloxetine back in January. It's left me struggling with pain levels, but the options are limited.

So sorry you were hit by this young! I have a family friend who became ill at age 19, and there was so much she wanted to do with life but has been unable to. While being forced to retire from my career in my 30's was hard, I am grateful that I at least got to achieve my ambitions and live a full and active life when I was younger. I think becoming chronically ill before you've had the chance to do the things you always wanted to is one of the cruelest things!
 
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