Has anyone with long-standing FMS started on statins?

[markinaboat]

Hi,

I'm 65 and have just been told that I need to go on statins due to my Qrisk score. Have suffered with Fibro for quite some time or at least the symptons as NHS have not been very helpful. Complicated after having been diagnosed with ME/CFS in 1994 but made a 99% recovery after a few years. Further complicated by having been on Lansoprazole for a number of years which is also a potential cause of muscle/tendon/neuropathy issues.

Just wondered if anyone with long-standing FMS has started on statins and given the risk of muscle pain/deterioration, how it's panned out for you?

Many thanks

Mark

 

[JayCS]

Hi Mark - not sure if you're going to return here, and not sure if my FMS is long-standing enough for you - but just in case: I've been taking 10mg, then 20mg atorvastatin, and I doubt it's giving me more muscle pain, but my docs (lipidologist & angiologist) agree that I should try to keep them down to 20mg as long as my LDL-cholesterol is down under 70, although my liporotein a is sky-high (160 instead of 30). Thru Mediterranean (vegetarian) diet (and perhaps TCM/acupressure) I've got it down to 46 now. We're keeping a close watch on all blood vessels, despite 1/3 carotid-plaque, they are all pumping very well - probably due to keeping up slow cycling and 4 games of daily outdoor table tennis, despite some myofascial pain & Ache after.

 

[markinaboat]

Hi Jay,

I'm guessing you may not be in the UK? We/I do not get access to that level of detail. They're purely focused on a basic Qrisk factor here. Have blood tests printouts but it seems the last reference is to HDL only in Feb 2019 which was 1.4 mmol/L. The total cholesterol HDL Ratio was 3.5 but no reference to actual LDL. I'm 5'11 and weigh 13st 8lbs (86kg). Because I had one bout of AF in 2010 without any previous or underlying heart problems (the consultant felt it was due to an infection) and nothing since, my QRSIK3 factor rises from 12 to 19.7%. According to the BMI index, I'd be healthy if weighed from 8 to 12.5 stone! He wants to start me on Rosuvastatin 20mg AND Ezetemibe 10mg at the same time as well as Clopidograll of course. So, I have little to no faith in our NHC/NICE.

 

[JayCS]

Yep, guessed right - next door ;-) in Germany; but family in the UK, so they only know their total cholesterol, too. HDL is the good cholesterol and needs to be higher than 40/50mg/dl = 1.0 mmol/l, so 1.4 sounds good. Lipoprotein a is something in fairly new studies which all 5 of my cardiovascular docs know about tho and shows that I have 'genetic hyperlipidemia', meaning diet is not enough, and meaning atorvastatin is necessary. My lipidologist checked my genes further, but they were OK. (I'd written alphaprotein a instead of lipoprotein above, edited now.)
I'm 3cm taller and 6kg lighter and trying to get that down 4kg more via loads of unsaturated fats (amitriptyline helped for sleep a bit, not pain, but put +6kg on etc.). The problem is I'm vegetarian, so I need lots of nuts and legumes (soy & peanuts). Are you told Mediterranean diet? Altho I have to be extremely careful with my diet anyway, due to IBSD. It took a while to get used to watching for unsatured fats, "no" sugars (under 12%), I also watch for complex instead of simple carbs, meaning less fruit, especially yummy sweet stuff...
Oh, true, I'm also taking Ezetimibe 1x10mg, and ASA/aspirin 1x100mg instead of your clopidogrel.
These were all chance findings in my case, starting with my GP checking blood pressure, which used to be good before fibro, but then he rightly thought the pain may be increasing that. Now it's under control I'm trying one pill less (1x8mg instead of 2 candesartan, 1x10mg lercanidipine). Isn't fibro enough, I was moping & moaning about for a week... but at least it isn't hurting.
I'm wondering what your docs would say if you asked them to check the LDL, triglycerides and lipoprotein a... At least your medication is almost like mine, so I wouldn't be too distrustful. More important is to get the diet and sports going to the max that fibro allows, baby steps if nec. Breaks in your 'training' has been found to be much better for the triglycerides than non-stop. Fast short walks are better than long slow ones (hmm, but then I'm under 3 minutes... ;-D).
Hope you don't get muscle pain from the rosuvastatin. Sounds better for cholesterol than atorvastatin, and is newer. (But atorvastatin is better for the lipoprotein a, my only problem now.)
My GP suggests taking Q10 additionally against muscle pain, which corresponds to new Danish studies. Had forgotten that, I'll get mine out again. It also seems that people who move a lot, like me, get more muscle pain. And of course: Tell your doc as soon as you get the muscle pain and think about changing the statin, that's what I've been told.

 

[markinaboat]

Detailed reply!

I no particular order, have just read that Q10 can decrease the effectiveness of blood thinning meds but am sure you're aware of that.

I'm 65 and have had 6 hip ops since teens incl. three replacements, spondylolisthesis, Ulcerative Colitis (cardiologist wanted me to take aspirin 75mm daily until I reminded him of the UC, hence the clopithingy..!) Was diagnses with ME (CFS) in 94 but made perhaps a 95% recovery and have lived a very active life (boating, motorcycling etc). In fact the Fibro could be the ME or vice versa, nobody knows.

I get bad muscle pain anyway, prevents me from sitting for lengthy periods, struggle sleeping on a 70/30 basis. Tendons tear without any effort if not careful and have developed arthritis in hands. I am an ex fireman/action man so probably abused my body until I was in my 40's and perhaps paying the price now. So, no training/strenuous physical excise for me. On a good day (during summer lockdown) I cold walk 2 miles very slowly with occasional stops. At the moment, 3/400 m is enough.

I am also pescatarian (since Oct 18) and have quite a healthy diet. In fact have never been a lover of fried foods other than occasional good ol British fish n chips of course, I mean, where would you be without your quorn bratwurst!? ;-)

So yes, my main concern as per my original post is the fact that the statins are quite likely to exacerbate existing muscle pain/issues when I still need to work and will do forever and a day (part-time). I will definitley look into the Q10 route after discussing whetehr I decide to start on statins or not.

Thanks for your valuable feedback Jay and apologies to any other readers if this thread has gone somewhat off-topic!

Look after yourself and have as good a Xmas as you can with the current restrictions.

Mark

 

[JayCS]

Hey Mark, - Q10:

thanks, no I hadn't known about Q10 clotting blood, so I've read it up too. But it seems it also has a positive cardiovascular effect, for me relevant is that it increases the good cholesterol (ah - there we have HDL again), which I could do with a bit. The article on helpherself.org (linked to a dead link) recommends close monitoring, which would not be easy, since my blood is flowing well, despite the plaque. The mayoclinic.org lists 9 side effects, all of which I am very sensitive to.

Looking up my own notes: It was enough in my bloods (1.83). There's old studies to take it together with ginkgo. Can be compensated by nuts and legumes, which I eat lots. Only necessary if very high cholesterol, mine is down due to diet. Good if reduced intracellular amounts of ATP, which I seem to have had, altho docs said that isn't really measurable.

An overview about Q10 (3x100mg/d!!) and fibro/ME/CFS on healthrising.org might interest people tho. Results are slightly encouraging, they conclude, perhaps reducing pain, depression and headache, perhaps as antioxidant, perhaps on a mitochondrial level.

So thanks - I'm stopping using it again!

Yep, will be having a good Christmas due to my Ache apparently going down from not working! And I don't feel the restrictions that much anyway, apart from supposed to be wearing a mask playing outdoor table tennis , but at least we can play, unlike in the first lockdown. You make yourself a nice Christmas too!

 

[markinaboat]

Thanks Jay,

Reading up the Q10 report at healthrising.org now.

Take care.

 

[JayCS]

(Hmm, my post-edit has gone haywire and doubled the post, so just ignore this, I can't find where to delete...)

 

[markinaboat]

UPDATE:

On day 12 of taking Rosuvastatin 20mg, my muscles on the side of my chest seized up. This moved around to my right side then haunch/rear above right pelvis. Then spread across to include the left side. To say I've been in almost perpetual agony for 6 days would be an understatement. I haven't been to the loo as can't sit down or get up again easily, only laying down helps and of course that's a challenge. Luckily, I've borrowed a raised toilet seat and frame from today although I'm not sure I can go as the pushing motion is too painful. I think the aforementioned muscles are in permanent cramp, either that or they're damaged by this damn medication that I was very reluctant to take for fear of being where I am now. I stopped taking this evil drug on day 12, managed to get my cardiologist to call me on Sunday who said "stop taking it". I'm waiting for my GP to call today but doubt they'll be of much or any help which seems to be the norm these days.

 

[JayCS]

Oh dear, sorry to hear that! Will atorvastatin be next after all...? Can extremely gentle exercises, and physio like osteopathy help you there?

 

[markinaboat]

Ay statin would have this affect it wold seem. My GP said Pravastatin is less likely but my cardiologist says this is not powerful enough and will not have the desired affect. I have to leave him now as can't afford anymore due to lack of work so back on the NHS. GP is not indifferent and says "how would you like me to help you". I'm just carrying on and hoping that the plaque doesn't increases or break away in the LAD.