Fibromyalgia / ME / CFS

janabelle

Well-Known Member
Messages
816
Dislikes
Lack of choice of insulin for newly diagnosed patients.
Dog owners who let their dogs poop in the street-a hazard for most, but worse if you're visually impaired!
Having RP
I've been on this forum for a year and a half, and arrived with a problem as many people do. I had been diagnosed with Fibromyalgia, following a seqence of events that started in 2004 with anxiety symptoms, exhaustion, pain, chronic fatigue, illness etc. I was diagnosed with Fibromyalgia nearly 3 years later by an eminent Professor at a major London Hospital. Although I was dubious about his assistant's initaial assessment of me, but the symptoms seemed to fit with the diagnosis. As part of this Professor's research, I was prescribed a dopamine agonist, but because of my doubts, I never accepted it.
I discovered, in 2008 that I had been misdiagnosed,and found the cause of my ailments and failing health. The problems were a side-effect of Lantus, and as they say, the proof of the pudding is in the eating. My suspicions were proved right when I came off it.
I recently found a booklet that i had been sent during my illness, from a local Fibromyalgia group. That's what inspired me to post this message.
The booklet is about Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome- ME. I was struck by the symptoms list, and can see how my side-effects were confused with this condition. They are as follows: Overwhelming fatigue,
Flu like symptoms
Painful muscles and/or aching joints
headaches
tender enlarged lymph nodes
sore throat
muscle twitching
unrefreshing sleep
abdominal and digestive problems
difficulties with short term memory and concentration
mood swings
problems with temperature control
facial pallor when tired
That's as listed in the booklet. Couple that with the "Fibrofog" that is associated with Fibromyalgia, and that's nearly the whole list of side-effects regularly reported by many people on Lantus and other synthetic insulins, including me. When I was ill, I phoned the Fibromyalgia helpline many times for advice on my worst days. The helpline was manned by sufferers, and the symptoms sounded so like mine, especially the cognitive dysfunction and constant exhaustion.
It took me 4 1/2 years of wondering what was wrong with me, and to be honest I was relieved to have a diagnosis,but my gut instinct, and behaviour of the Professor who diagnosed me, made me doubt the diagnosis.
Had I not discovered the real cuase, I'd be on anti-depressents that my diabetes consultant prescribed me in 2005, and the dopamine agonist also prescribed, and my diabetes would still be erratic and uncontrolled.
Jus
 

Dobbs

Well-Known Member
Messages
182
dear Jus,
you poor thing! what a horror story! thank you for being so brave and sharing this. As a type 2 without big problems (only small problems) I feel very fortunate when I read what you wrote.
You are fab and I hope your health will get better and better from this point on.
 

totsy

Well-Known Member
Messages
3,041
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
liars, animal cruelty
i do have m.e/cfs and it is similar to so many other illnesses hence why they rule everything else out before being diagnosed :D
 

graham64

Well-Known Member
Messages
841
Dislikes
Ironing, cooking, shopping. Pessimists, people with sense of humour bypass. Speed cameras Traffic wardens, Nanny state and Hypocrites
Hi Jus,
I'm not a T1 but I've got to say I admire your tenacity in spreading the message about Lantus, I have seen mentions about the problems before and understand were your coming from.

Regards
Graham
 

janabelle

Well-Known Member
Messages
816
Dislikes
Lack of choice of insulin for newly diagnosed patients.
Dog owners who let their dogs poop in the street-a hazard for most, but worse if you're visually impaired!
Having RP
Thanks Dobbs for your kind message :)
The reason I remain on this forum is that I have discovered that my story is not the worst-people don't just lose their health, but it impacts on their whole lives, including relationships and careers.
I completely understand what you're saying Amanda, and some people don't have the problems that I and others have experienced on Lantus, but a significant number have. Too significant to be ignored.
I would really like to find out why that is; whether it is dose related or otherwise.
As for everything else being ruled out before a diagnosis of Fibromyalgia/ME/CFS is made, that simply is not possible, and not what happens, as I and other people i am in contact with have experienced.
How many people have been prescribed anti-depressents after a five minute consultation with a GP?
There is a problem, and misdiagnosis of Fibromyalgia/ME/CFS seems to be a common factor for some patients having probs with Lantus. The symptoms are so similar, it is completely understandable.
Graham, I do go on about it;and thanks- you call it tenacity, I consider it a necessity :)
I hope that someone can help find the solution to this, cause it isn't going away.
Jus
 

totsy

Well-Known Member
Messages
3,041
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
liars, animal cruelty
hya jus,
i do understand where u are coming from and agree that you need to spread the word, it is true that many drs give out anti depressants willy nilly too, ive been there myself, glad to see you are feeling so much better than before,take care and keep well :D
 

janabelle

Well-Known Member
Messages
816
Dislikes
Lack of choice of insulin for newly diagnosed patients.
Dog owners who let their dogs poop in the street-a hazard for most, but worse if you're visually impaired!
Having RP
Amanda,
Thanks for that, you were one of the first people I came into contact with on this forum, so it means a lot to me.
Jus x