fibromyalgia and type 1

Hi Megan
It's great that you've found an understanding and caring GP- shame they're not all llke that eh?
As for Fibromyalgia- many people do suffer from this condition and it's debilitating and horrendous. However it tends to be a "catch-all" term used when no other physical reason can be found for the persistant fatigue, pain and illness.

I was diagnosed with Fibromyalgia by an expert in the field at a well known London hospital and specialist Fibromyalgia clinic. The inital examination which apparently proved I had the condition consisted of a junior doc prodding me here and there and asking if the points she touched were sensitive :? I was then prescribed a Dopamine Agonist drug by the Proff and sent on my way. I doubted the diagnosis and never took the medication. i'm very glad I trusted my instincts, although I struggled on for the next 2yrs still not having a clue what was wrong with me.

I discovered in '08 that my illness was caused by analogue insulins, for me it was Lantus; and I never had Fibromyalgia at all! The prof wasn't interested in this info at all, and got quite shirty with me. In my opinion he was nothing more than an unscrupulous charlatan, gathering cannon fodder for research purposes and only interested in making a name for himself

It's interesting to note that analogue / synthetic insulin side-effects are pretty much identical to those of Chronic Fatigue Syndrom, ME but especially Fibrobyalgia.
Jus

Hi again Megan
As you're already Hypurin porcine Isophane, i can't see any good reason why your doc should refuse you trying the Neutral instead of Novorapid. You're illness might be caused by Novorapid but it might not, and the only way you'll find out is to stop taking it. I think it would be better to try the Porine Neutral for a bit, than get treated for an illness you may not even have. If you suggest a trial of 2 months to your doc he might be more agreeable to the suggestion.
I can totally relate to how fed up you're feeling -you need to find out what's wrong,so you can get on and enjoy your life again. For this reason I hope Novorapid is the cause.
I know of people who'd been on lantus for years before they realised it was causing them probs, or the probs accumulated over the years. I don't know about Novorapid, but it might be worth calling the IDDT peeps again to see if they can give you any info on that.
Jus x

Hi again Megan

megan said:

i'm so scared of him and worried he will just palm me off as effectively a 'nut job'.....and its just my diabetes and me that plays silly games :roll:

Click to expand...

LOL, that's exactly how I felt in '08 when I went to the clinic to get my insulin changed. Hopefully you'll be as pleasantly surprised as I was. With any luck your doc won't be such an ogre the day you see him. Anyway don't be intimidated, it's your body and ultimately it should be your decision, I can't see any good reason why he should decline your request. You'll be fine
Jus x

I am really shocked that synthetic insulin can cause the reactions mentioned.
I have a post up regarding my tiredness and exaustionand how hard I am finding life in general. Someone asked what insulin I was on..... I now remember that I returned to porcine insulin in the 80s due to blacking out hypos. I returned to synthetic insulin around 2003 - and I have noticed that my tiredness and exhaustion had begun around 2004 and increased around 2007.
I am going to see if I can try and return to porcine insulin for a while to see if things improve. Surely it is worth a try?
Thanks for this info. .... although I dont think I have fibromyalgia, I am willing to try anything to try and get my life back.
I totally sympathise with your symptoms of feeling exhausted and tired.

Megan

Has your GP checked you over for tender points in your body. Diagnosis of fibro is mainly made nowadays from being in constant pain in at least 11 points out of 18 for at least 6 months, as well as being depressed and constantly tired. I have pain in 16 out of the 18 points that they use for diagnosis. Often, it is only rheumatologists that diagnosis this, and it may be worth asking the psychiatric nurse to be referred to a rheumatologist, but that really depends on whre and what your pain is.

I admit readily nowadays that I though all my pain was down to statins, but now admit that I have fibromyalgia and am actually glad of the diagnosis, as just that diagnosis alone makes me think that it is my body and not me imagining things!!!!

I have also suffered from chronic memory problems, and still do. Just last week I had to go searching for the milk........instead of putting it in fridge I had inadvertently put it in a cupboard and never found it for 4 hours....this I could understand for an elderly person, but I am only 47!! Years ago, I could not find my way to a customer, despite me having had her as a customer for 3 years and going there every week. I checked my blood and it was perfect. So this really was the start of me going to a dementia clinic, where originally they then diagnosed me with pernicious anaemia and palindromic rheumatism. These diagnoses last year were wiped off my records as being inaccurate and with a new diagnosis of fibromyalgia.

I psychiatric nurse does not necessarily mean bad.....I too was referred to a psychiatrist. A pscyhiatric nurse is more of a specialist than a general prectitioner, and will certainly have more time to discuss with you what is happening. Have a look at fibromyalgia websites, there is a lot of information on them (I can't look at their forums though, as when I did I found them toooooo depressing!!), but general info and diagnosis and symptoms are good.

I wouldn't particularly worry about seeing a pscyhiatric nurse. You certainly will not be their worse patient, but they will be more aware of medicines for fibro and depression etc than others.

Megan

Has your GP checked you over for tender points in your body. Diagnosis of fibro is mainly made nowadays from being in constant pain in at least 11 points out of 18 for at least 6 months, as well as being depressed and constantly tired. I have pain in 16 out of the 18 points that they use for diagnosis. Often, it is only rheumatologists that diagnosis this, and it may be worth asking the psychiatric nurse to be referred to a rheumatologist, but that really depends on whre and what your pain is.

I admit readily nowadays that I though all my pain was down to statins, but now admit that I have fibromyalgia and am actually glad of the diagnosis, as just that diagnosis alone makes me think that it is my body and not me imagining things!!!!

I have also suffered from chronic memory problems, and still do. Just last week I had to go searching for the milk........instead of putting it in fridge I had inadvertently put it in a cupboard and never found it for 4 hours....this I could understand for an elderly person, but I am only 47!! Years ago, I could not find my way to a customer, despite me having had her as a customer for 3 years and going there every week. I checked my blood and it was perfect. So this really was the start of me going to a dementia clinic, where originally they then diagnosed me with pernicious anaemia and palindromic rheumatism. These diagnoses last year were wiped off my records as being inaccurate and with a new diagnosis of fibromyalgia.

I psychiatric nurse does not necessarily mean bad.....I too was referred to a psychiatrist. A pscyhiatric nurse is more of a specialist than a general prectitioner, and will certainly have more time to discuss with you what is happening. Have a look at fibromyalgia websites, there is a lot of information on them (I can't look at their forums though, as when I did I found them toooooo depressing!!), but general info and diagnosis and symptoms are good.

I wouldn't particularly worry about seeing a pscyhiatric nurse. You certainly will not be their worse patient, but they will be more aware of medicines for fibro and depression etc than others.

Megan
I can completely understand why you are wary. It's hard when you're not being listened to and being "labelled". It's very easy for docs to diagnose depression, fibromyalgia, CFS and the like, but the truth is there is no true test to show that anyone actually has these conditions, and the symptoms, as I've said before are almost identical to synthetic insulin side-effects.
I met a psychologist last year who was more than interested in what I had to say about Lantus, especially as many of the type-1s she knows through her work, also have Fibromyalgia!.
I take everything with a pinch of salt since my experience with the "Fibro" expert LOL. Doctors are not god, there's a lot of guesswork and assumptions made based on their training and experience.
If you're not happy seeing a psych nurse instead of the doc you saw previously, contact them and insist.
Best of luck
Jus