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fibromyalgia and type 1

megan

megan

Well-Known Member
Messages
369
Location
weymouth
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
dishonesty and ********
met a new gp, she was lovely and listened!!!! :D

thinks i may have fibromyalgia...........am being weened off the prozac and then in a month will try a new anti depressent which is apparantely the appropriate treatment.

its kind of a relief to be listened to and know that i am not going bonkers......when asked....i couldnt actually say the last time i felt well.

this could certainly explain a lot of my problems.......the diabetes treatment not working doesn't help anything,.....but could this be whats been effecting it?

would like to know any thoughts or information on this....

thanks
 
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 :)
 
wow....very interesting...

after previous contact with yourself and then eventually the independent diabetes peeps....i got onto hypurin bovine isophane......i am still however on the novo rapid..........could changing that then make a difference?.....do i have any hope of being able to change to that...mmmmmm.........i go back to my original and only diabetes dr at the end of this month and i am pretty sure he will be saying a big fat NO and that its all mumbo jumbo!!!!

but this is all getting even more ridiculous....i am completely fed up with it......i put on a brave face each day when i feel anything but...

i hurt...i can't work...i can't exercise....i have got to the stage of barely functioning......my injections are soooo painful i don't know what to do with myself!

i am exhausted at the smallest task..even putting on my boots!

i seem to sleep during the day as much as possible every other day or so....i just cannot cope with much these days...

and now i have to take my prozac every other day for two weeks then every 3 days for two weeks until i can then go onto a new anti depressent to try and help this fibromyalgia??!

i have been on novorapid for years...could coming off that really be the possible answer?
do appreciate your thoughts :)
 
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
 
thanks....yes the IDDT peeps thought it was quite possible it was the novorapid...interesting

the only thing is that i am on prozac now and am being weened off it by the gp.....then switch onto a new antidepressent to help both the fibromyalgia and the way i feel emotionally.....so having a change of insulin at the same time....(which i do not want to put off if i can help it) will make it difficult to know what medicine is doing what when it comes to feeling better....?

i had another dr say the other day that what i call a good day should actually be a normal day and feeling bad all the time is not on..........wow ....could she say that to the diabetic dr please!

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:
 
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 :D
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.
 
my appointments have now come through and i have another scan for the UTI's in april....the diabetes dr end of march.....and i have just had my notes sent to my new gp and i think my at present UTI results have gone astray in the process.........also i have finally had an appoinment through for what i thought would be the dr that put me on prozac in the first place and put me forward for the CBT.....

but apparently the system has changed and he is now doing more managerial work and so i have been assigned a psychiatric nurse!...........

i don't feel at all comfortable about this

feeling cr*p i feel is the problem for not feeling emotionally great........and having the constant battles of not being listened to by the experts that are meant to help you.........

so what to do....do i go back to my new gp and explain how i feel or do i turn up to this psych nurse appointment and get a proper nut job lable and eventually pointed in the wrong direction for help!
 
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 :)
 
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