joint and muscle pain

[nan]

Hi, I'd welcome any advice about joint and muscle pain. I take simvastatin and to 'counter' the effects I take Co-enzyme Q10, alpha-lipoic acid, fish oils and herbal joint pain tablets. My last hba1c was 6.8.I take lantus and oral medications. I have been prone to fibromyalgia, from before i was diabetic, but find now at 57 that I get days where the pain in my muscles and joints is really disabling. The doctor says there's "really nothing" he can do because of my other medication. I've already changed my cholesterol medication previously but wonder if I should change to something else to ease the pain which is causing me dreadful problems, particularly at night. Any advice would be really welcome. Thank you.

 

[IanD]

Many of us have had such problems with simvastatin.

How "bad" is your cholesterol? I started out (10 years ago) at 7.6 & its currently 4.8 with diet alone. Reduced carbohydrate, oat bran, almonds, & cholesterol reducing marg, which I stir into my ground almond & bran "porridge" which I make with soya milk. (I don't have bread to spread it on.)

I did try sv but it was so painful I had difficulty getting out of bed.

 

[suzi]

Hi Nan,
Is there any chance your muscle pain increased when you went onto Lantus? I only ask as my son has often suffered with "growing pains" but when he was changed to Lantus the bouts of pain became unbearable, we have since changed to Levemir, and the pain is almost non-existant. We believe there was a link and muscle pain was only the 1 of many reasons why we changed insulins.
Suzi x

 

[cugila]

The doctor says there's "really nothing" he can do because of my other medication. .

If that's the case then you need a second opinion, a referral to a specialist who can deal with ALL the problems. Your GP is now obviously out of his comfort zone. Get some expert advice.

Ken

 

[debbietowns]

Hi,
Have you tried Amitripilyne which are anti depressants but used widely to control pain. I was very dubious at first but my aches and pains started to go after a few weeks and now after six months i now don't have 'Fibromyalgia' any more. My GP started me on a very low dose 10mg and built up gradually to 70mg. (for depression i understand the dose is about 150mg). I found out that they are not really habit forming or anything awful when you want to stop you cut down gradually. Please note i am new here today and only replied when i saw the Fibromyalgia word as i thought i might be able to help you. Its only my own personal experience after ten years of muscle pain and every test going.
Debbie

 

[janabelle]

Hi,
I would suspect the Lantus, it's notorious for causing joint and muscle pain.
I developed pains in my arms, shoulders and chest area within months of going on Lantus. I was referred to a physiotherapist at my local hospital who then referred me to a rheumatologist. He suspected fibromyalgia and referred me to a specialist-who turned out to be a quack,and confirmed it- it was all rubbish as I since discovered.
It took another 4 years and many other side-effects for me to realise it was Lantus. Needless to say since coming off it and changing to porcine insulin, I no longer have the problem,or the other side-effects which included debilitating exhaustion, lousy BG conrol, and feeling like I was being poisoned-I actually accused my husband of poisoning me, the poor man.
I've since discovered that many people have suffered similar side-effects on Lantus.
It makes me wonder how many other people are being mis-diagnosed with conditions as a result of the side effects of synthetic insulins or other medications.
Best of luck
Jus

 

[philipburdekin]

Hi,
Have you tried Amitripilyne which are anti depressants but used widely to control pain. I was very dubious at first but my aches and pains started to go after a few weeks and now after six months i now don't have 'Fibromyalgia' any more. My GP started me on a very low dose 10mg and built up gradually to 70mg. (for depression i understand the dose is about 150mg). I found out that they are not really habit forming or anything awful when you want to stop you cut down gradually. Please note i am new here today and only replied when i saw the Fibromyalgia word as i thought i might be able to help you. Its only my own personal experience after ten years of muscle pain and every test going.
Debbie

Hi
Perhaps and I have run the local fibromyalgia group for the last 7 yrs, it isnt something that goes away after 6 months unfortunately as it is a life long illness, you do however suffer different pains with diabetes and they can be very simillar to fibro pain.
The Amitripilyne works by raising the pain threshold and can help with pain caused by the nerve ends caused by diabetes.

 

[zarasdreamz]

Hmmm, this is making me think about the link between pain and lantus. I too have terrible pains in my muscles particularly upper arm and shoulders which has become increasingly worse the last couple of months. My doc gave me tegratol and ametrypline, helped a bit but no longer. She even thought I had Polymyalgia Rheumatica, but blood test were negative. I think she has given up now ! After reading the posts I wonder if it actually the Lantus ..... need to ask next time I go.

 

[janabelle]

Hi Zarasdreams
You will be very lucky to have a doctor who will consider taking you off Lantus, despite suspicion about your symptoms being linked with it. If you suspect it, please don't make the mistake of leaving it as long as I did- I had no inkling untill my health deteriorated much further. By then I had been misdiagnosed with fibromyalgia, but suspected something worse!
Do some internet research and contact the IDDT. I hate to say it but I have my suspicions as to why docs want to keep people on Lantus rather than changing it, and that it's probably research related. I read on the MHRA website about Ashfield Nurses being offered financial incentives by Sanofi Aventis to put patients on Lantus.;even though the complaint was not upheld, it still makes worrying reading.
Jus

 

[sugarybibs]

I to have terrible pains in my shoulders arms even now my knees.I have been on lantus since it came out about 10 years i think.each time i tell diabetes nurse or doctor the say it cannot be the lantus.i have had diabetes type 1 for 39 years and thier excuse is because ive had it for so long i will get these symptons!I dont believe this because i know people who have had it longer than me who go to my clinic and they dont seem to have these symptons
.also the feeling of exaustion is awful i feel really tired even when my blood sugar is normal i have been trying to find a job since all the kids have left school and are working but i doubt if anyone will take me on with these symptons now.i was thinking of trying to claim some kind of sickness benefit but as my partner works full time i cant even claim any benefits except our free prescriptions.anyway my appointment in on tuesday after bank holiday and this time i am making sure i tell this specialist that i am not taking lantus anymore and need to try something else :x :x

 

[janabelle]

Sugarybibs
Your symptoms mimic mine and so many others. How would you describe the exhaustion or tiredness you are having?
Jus

 

[kewgirl]

Hi Sugarybibs

As a fellow Type 1 diabetic also for 39 years I suffered debilitating side effects whilst on Lantus (6 years) including muscle & joint pains, chronic fatigue, memory difficulties, loss of hypo symptoms, a feeling as if I wasn’t quite in touch with the world even when BG levels normal. I had to give up my job & struggled to walk even from the sofa to the toilet and back.

I was diagnosed with Fibromyalgia, ME and then MS :shock: before I became aware of the possible link with Lantus. :idea:

Having come of both Lantus & Novorapid I feel as if I have got my life back and its no exaggeration to say I feel “nearly” like a new woman. :lol: :lol: :lol: :lol:
I have been left with some residual difficulties & I am unsure if these will be permanent or may gradually over a longer period of time slowly disappear.

I firmly believe that some diabetics taking Lantus experience good glycaemic control and no side effects whilst a significant number of diabetics experience poor glycaemic control and/or debilitating side effects whilst on Lantus. In my experience the side effects got progressively worse.

Sugarybibs you will probably find that the diabetes team will push you to try another GM synthetic analogue i.e. Levemir but you do have a choice.
Animal insulin’s and human synthetic insulin’s are both readily available.

The IDDT (Insulin Dependent Diabetes Trust) are also a good resource to contact if you feel Lantus is causing you problems.

http://www.iddinternational.org

Wishing you all the best.

Txx

 

[kewgirl]

Hi Zarasdreams

I totally agree with janabelle. Once a diabetic is on a GM synthetic analogue it is sometimes difficult for health professionals to even consider that the analogues are causing side effects and/or poor glycaemic control. :x :x :x :x

The DOH are currently denying there are any significant difficulties with analogues which unfortunately echoes their response when some diabetics changed from animal to human synthetic insulin and experienced similar difficulties.

In my own experience the side effects got progressively worse. My pain included arms, shoulders, hips, legs & feet – it would not be uncommon for me to sit on the sofa and be unconsciously rubbing my arms and elbows in an attempt to get relief. :cry:

Since ditching the Lantus and returning to Porcine Animal Insulin the pain has completely disappeared, as has the joint stiffness. My only regret is that I didn’t make the connection with the Lantus sooner. I have been left with some residual difficulties which may be permanent or may gradually over a longer period of time slowly disappear.

The IDDT (Insulin Dependent Diabetes Trust) are also a good resource to contact if you feel Lantus is causing you problems.

http://www.iddinternational.org

best wishes

Txx

 

[sugarybibs]

Thanks kewgirl you must have got diabetes the same time as me but actually i was 17.I am fuming because ive just got phone call from my hospital doctors receptionist to say my appoinment on tuesday the day after bank holiday is cancelled because doctor is not there and i had it all written down what to tell him now i will have to wait for another appoinment to come through post.I also have very stiff joints and felt ashamed when i was doing my gardeining and couldnt get up!!!everyone thought i was messing .My kids were saying it s old age :lol: :lol: but my neighbour in her 80s has no problems with her joints.I am blaming lantus and also i keep forgetting things.The doctor will probably say that is old age to :lol: Also another thing bothering me is when i wake up i feel i have been drugged or got a kind of hangover even if i havnt had a drink.Well i cant wait to see if i can change my insulin the sooner the better.all the problems some people have had on lantus is like the symptons i have.Anyway lets all have a good bank holiday and i will think about my problems tomorrow :lol:

 

[zarasdreamz]

Hi all, just got back from my hols and catching up on posts when I re read some you said something Jannabelle which made me dig out the latest letter from my practice nurse.
Apparently I am to see a diabetic nurse advisor employed ny Ashfield Health care ltd, sponsered by Sanofi-Aventis. Now then this is making me think !! I have asked for my insulin regime to be reviewed as I am wondering if it is the Lantus that is causing me such pain in my joints and myscles, my practice nurse who is my diabetic nurse said she would ask the "expert" as she couldnt be sure there was a link as she had not heard of it before. I am now thinking that coming off Lantus is not going to be easy Who are these Ashfiled nurses? What is their role? I havent heard of them before I read it on here and then recieved a letter when I got home.

By the way hol was great , but pain so bad I couldn't walk more than a couple of hundred yards with out having to sit down and the pain in my arms and shoulders was so bad at night I could barely turn over in bed. Surely this cant be right I am only 50 fgs!!

Zara x

 

[etmsreec]

Interesting thread.
I've just registered on the strength of this thread and my similar experiences.
I'm type 1, treated with Novorapid and Lantus.

I'm suffering with pain in my shoulders and upper arms, limiting my movement. I also get some discomfort in other muscles but not as bad. I'm also Coeliac, suffer with Dermatitus Herpetiformis (another gluten-related condition) so it's the real full-house!

I'd started thinking that maybe the Novorapid was the cause f my problems since I tend to inject that in my arms, backside and tummy. After reading this, maybe it's the Lantus that's the problem. It would fit with when the problems first started.

 

[zarasdreamz]

Etmsreec, confusing isn't it? I too take novo rapid and Lantus with same pain as you, I dont think I have had a really well day in about 2 yrs. Pain in my arms makes me feel sick and want to cry, when I told the GP, she said you are already on Tegratol not much more I can do, maybe you should try and exercise more that might help! Bit hard to exercise more when getting dressed or brushing my hair makes me want to weep ! fed up with this diabetes lark now

 

[catherinecherub]

Hi zara,
Have you ever considered that you may be suffering from frozen shoulder?

If you do a google search then you will find it is very common in diabetics and some get it in both shoulders.

Pain when brushing your hair, getting dressed etc.... are the commonest symptoms. Although it is the shoulder that is frozen you will find that the pain affects most arm movements.

There is a thread on the forum and I am sure someone will find it for you.

 

[zarasdreamz]

thanks Cath xx

 

[sugarybibs]

Etmsreec, confusing isn't it? I too take novo rapid and Lantus with same pain as you, I dont think I have had a really well day in about 2 yrs. Pain in my arms makes me feel sick and want to cry, when I told the GP, she said you are already on Tegratol not much more I can do, maybe you should try and exercise more that might help! Bit hard to exercise more when getting dressed or brushing my hair makes me want to weep ! fed up with this diabetes lark now

Hi Etmsreec i had those symptons years ago and was going to doctors for about year he sent me to physio then found out it was a frozen shoulder.i went in hospital had the operation in for about 6 days still couldnt move my arm to comb hair hair or hang washing up etc or put my hand up my back but cleared up in about two weeks and was great after that.What i have now are really stiff movements in my other arm and me legs etc but i still have to wait till my hospital appoinment in november to ask for a different insulin than lantus