Fibro and statins: So my cholesterol is... - Fibromyalgia Acti...

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Fibro and statins

Fightingwithdad profile image
34 Replies

So my cholesterol is high, well over 7, tho got it to 6.3 using sterols and oatbran. Dr said too high but was concerned about statins as I have fibro, and didn't want me to suffer even more pain! Just heard of someone advised to take statins, refused, and had a heart attack 2 months later. No idea what my level is ATM, Dr has offered me another test, but feels it's not an easy decision to put me on stations. Anyone out there taking statins although they have fibro, and do you have even more pain?

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Fightingwithdad
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34 Replies
Hartleyhare2 profile image
Hartleyhare2

Hi! I take Statins, have done for long time as diabetic. I'm naturally 4.5 and on them 3, Dr says figure can't be too low.

When being diagnosed with fibro they took me off statins for a couple of months to see if that caused/affected pain. Made no difference at all to pain, just went back to 4.5.

Health friends say don't take them, Gp says they are good for you and helping. I'm stuck in the middle! Still taking them but toying with idea of stopping. I really don't know. Like to here what others think.

But, for me, no difference to pain whatsoever.

Patrick x

Fightingwithdad profile image
Fightingwithdad in reply to Hartleyhare2

Agree, it's either a wonder pill, or very bad news! Dr seems loathe to put me on statins, with my pain pretty high anyway, with both fibro and oa, maybe I'd be lucky enough not to suffer MORE pain... Just not sure what to do.

Hi there, I have to agree about statins and fibro, they do make your muscles mega sore!. I recently read that statins are not proving to help many people they only help those with a minimal increase of say 5.5 or 6. (normal needs to be under 5 now I am told) As for your heart attack I hope you have recovered, can I say to you as a retired nurse that its not just cholesterol that can cause a heart attack so don't take that to "heart" too much, I would ask your cardiologist to offer you explanation of what caused yours, it could be a blocked valve, a faulty valve, a ventrical failure, high blood pressure, certain meds we take are also a risk. Yes our grub can be a contributing factor and I now have a small plate of food , not piled up, I still have fish n chips on Friday but I share the portion with others., because I am retired I only eat twice a day, my fibro keeps my mobility minimal and so I don't burn off calories, I don't force food down when I get up I have "brunch" and then an evening meal, no snacks, no choc, no sugar minimal salt,, OOh that sounds a challenge but I have got used to it and I am loosing weight slowly, it has not gone up!

Fightingwithdad profile image
Fightingwithdad in reply to

I've not actually had a heart attack. Just heard of someone who did, 2 months after refusing statins! I do need to lose weight, have put on a good few pounds due to immobility after recent knee replacement, and I did manage to lower my level with diet before. I dislike taking medication nowadays, reduced kidney function due to years on diclofenac was a shock! Think I'll take up DR's offer of retesting me, then make the decision.

in reply to Fightingwithdad

Hi fighting with dad I too was given diclofenac (voltarol) years ago - for cervical spondylitis - had been taking it for five years or so - woke up one Saturday morning and lower half of my legs were swollen and had a rash on them itvwasnt itchy.

I couldn't walk had to come down the stairs on my bum - couldn't put shoes on only slippers - these were the days when GP surgeries were open on a Saturday morning and without appointments.

Gave me piriton antihistamine as he reckoned I had an allergic reaction to something but didn't know what.

Told me to come back on the Monday morning - I did but legs still swollen rash had spread to the tops of legs too plus my arms.

Saw a different doc who asked me had I stopped the voltarol I said no so he told me to stop taking it - by the Wednesday everything had settled down legs back to normal no rash anywhere - he put it down to my body reacting to voltarol so was fighting to get rid of it out of my system - he then gave me another anti inflammatory which I had no probs with but I had to come off that later as I'd developed late onset of asthma.

My hubby takes statins as heart probs are high in family his dad died at 58 heart attack and his mum had a triple bypass about 10 years ago so he's an at risk group. Take care 🤗🤗

in reply to Fightingwithdad

Its a slow process with fibro mobility, I hope you manage a few pounds now and then, as long as its downward that is good. I still need to lose more, as the summer months come I will go to hydro more often(I will have to pay) and try to get swimming because at the moment I need a rubber ring on to stay afloat!!

Fightingwithdad profile image
Fightingwithdad in reply to

Not easy to lose weight with oa and fibro! I saw neurosurgeon couple if years ago because of back pain...told me to get fit and lose weight! Daughter pointed out because of my back issue ( losing feeling in left leg) I couldn't walk far, he told me to walk short distances!!! Despite being told I fall over when I try to walk with the numb leg..he had zero empathy!!! It's such a vicious circle, I've put on weight during recovery from a knee replacement, the same weight I lost before my surgery,! Grrrr

Bertiedette profile image
Bertiedette in reply to

you are a saint...xxxx

Fightingwithdad profile image
Fightingwithdad in reply to Bertiedette

Haha, not quite, I do my best!

Bertiedette profile image
Bertiedette in reply to Fightingwithdad

Since Christmas I cannot seem to stop eating biscuits.

Everything I eat is very healthy except this inability to stop craving treats... have type 2 as well I feel so ashamed of myself . How easy it is to get hooked on bad habits again.. spent 3 years eating like a saint.

Fightingwithdad profile image
Fightingwithdad in reply to Bertiedette

I'm fine all day, come evening I want to eat junk. Chocolate biscuits and crisps! Wouldn't have them in the house, but others want them!

Sniffer8 profile image
Sniffer8

I was put on Simvastatin in 2007, I stopped taking a couple of times in ensuing years to see if made any difference to muscular pain and weakness but no improvement noticed. My GP has always urged me to stay on statins. We tried Pravastatin to see if any difference and then onto Atorvastatin which is unusual insofar as don't need to take at night. My cholesterol at time of prescribing this was 8 plus. I'll remain on this now and blood cholesterol no longer routinely checked. I'm resigned to taking them because with a progressive spinal condition, hypertension and fibromyalgia I'm a physical wreck. I reckon if I didn't take I'd be a perfect candidate for heart attack or stroke?

Fightingwithdad profile image
Fightingwithdad in reply to Sniffer8

I know how you feel, I don't feel so invincible nowadays! Now have a great Gp who actually listened.. Result is diagnosed with fibro, already knew I had oa, severe sleep apnoea (cpap machine now) chronic kidney disease ( diclofenac) high cholesterol, and degenerative spine disease! So, like you, not so confident that nothing's going to happen to me health wise!!

Sniffer8 profile image
Sniffer8 in reply to Fightingwithdad

Happy days eh! I have post traumatic syringomyelia, do you mind me asking what your spinal condition is?

Fightingwithdad profile image
Fightingwithdad in reply to Sniffer8

Basically oa. MRI 2 yrs ago showed bulging discs, nerve compression, bone spurs, mild stenosis. Apart from pain, walking or standing results in left leg numbness with burning pins/needles front of right thigh, sitting leaning forward brings back feeling. Since left knee replacement in summer I now can only sit for a short time, otherwise pain in right lumbar region is so severe I end up on the floor. So pretty knackered!!!

Sniffer8 profile image
Sniffer8 in reply to Fightingwithdad

You sure have plenty to cope with! I'm losing my mobility and in time will need a wheelchair. Bowels and bladder are amongst other frustrations becoming more sluggish and my days increasingly dominated by urge to eliminate but with little result. I'm perpetually tired, no energy and ache constantly. Don't have much faith in specialists.

Fightingwithdad profile image
Fightingwithdad in reply to Sniffer8

I understand your angst! Its all so frustrating, no real answer for the fibro pain, nsaids were so helpful for my oa, now a big no-no, pain 24/7, but on a positive note, somehow, I sleep well!!! Thankful for that!!

rosewine profile image
rosewine

I was on statins before being diagnosed with fibro. We had to try 4 different makes before we found the one I have been on for years and even then I have the lowest dose. It brought my readings down from 9.4 to 6.4. I unfortunately have the familial type of high chlorestrol do nothing to do with diet or lifestyle.

When I went on the first type I thought I was going mad. Within days I had gone from active to someone who could barely hobble as the pain in the muscles if my legs was so extreme. I went back to my GP and hobbled in and he thought I had had a fall! The next two were the same and then as I say this one I can just about tolerate.x

Ward profile image
Ward

Hi there i take statins for high cholestral my friend also takes them she seems to think they make her fibro pain worse. Its a side effect apparantly how could we know that until we come of them. Fibro could be slightly better laurax

TheAuthor profile image
TheAuthor

Hi Fightingwithdad

Thank you for such an interesting post, I have pasted below an excerpt from the *spacedoc cache on this issue, which is quite interesting:

*Statins and Fibromyalgia

*Statin side effects are often misdiagnosed as fibromyalgia. Both conditions have general fatigue and muscle tenderness. Fibromyalgia has a complex of multiple tender points that can often be confused with the generalized tenderness of statin myopathy.

Currently there are no laboratory tests available for diagnosing fibromyalgia. Doctors must rely on patient histories, self-reported symptoms, a physical examination and an accurate manual tender point examination. This exam is based on the standardized American College of Rheumatology (ACR) criteria. Proper implementation of the exam determines the presence of multiple tender points at characteristic locations.

Similarly, there are no laboratory tests specific for statin myopathy for all blood tests may be normal. Even the C-reactive protein test for inflammation may not be elevated. The only reason to consider statin causality is that a person with muscle pain is on a statin drug. The nature of the statin or the dose is irrelevant for all of the statins are associated with this tendency for myopathy and any dosage other than the very minor ones has been associated with tender muscles.

Many fibromyalgia symptoms overlap with those of other conditions, thus leading to extensive investigative costs and frustration for both the doctor and patient. Another essential point that must be considered is that the presence of other diseases, such as rheumatoid arthritis or lupus or even statin myopathy, does not necessarily rule out a fibromyalgia diagnosis. Fibromyalgia is not a diagnosis of exclusion and must be diagnosed by its own characteristic features.

Complicating things even further is that we are seeing many cases of statin induced myopathy with negative laboratory findings, that persist and even intensify even after the statin is stopped.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

Ward profile image
Ward in reply to TheAuthor

Your post was very interesting didnt no much of that . You dont get told these things. Thanks ken

TheAuthor profile image
TheAuthor in reply to Ward

That is so true my friend. I usually get told: ''Here is a prescription for ........'' and that is it?

Ward profile image
Ward in reply to TheAuthor

Very true

Tabby-Cat profile image
Tabby-Cat

I take a higher than average dose of simvastatin because my cholesterol was 8.3 and my mother suffered a stroke and my father had a heart attack. The statin didn't increase my pain levels.

Fightingwithdad profile image
Fightingwithdad in reply to Tabby-Cat

That's good, I'm sure not everyone experiences the same side effects of medication, but my Gp seems very wary of putting me on statins.

Neonking profile image
Neonking

Hi I took statins reduced my cholesterol then stopped taking them . Once my level was reduced and hopefully it will stay down I have changed my eating habits which helps.

Fightingwithdad profile image
Fightingwithdad in reply to Neonking

That sounds good! That could be an option for me. How long did it take to get your levels down?

Neonking profile image
Neonking in reply to Fightingwithdad

It takes at least 3 months for any change in levels to be detected.

And As others have said Vit d is Important

Fightingwithdad profile image
Fightingwithdad in reply to Neonking

Thanks!

Here is one for you a smack in the eye for brain dead Quacks!

Get your vit D checked as Vit D controls Cholesterol levels!!! ding ding ding!

Someone i knew had there's spiralling upwards did no fat all the things you have tried etc said by dumb quack yet when was really high like yours was at hospital having tests there was a new doc there they asked can he check things she said yes he'd not long been out of med school said your vit D levels are too low and said above as something new they have found out as like i always say the body is the sum of all the parts not parts of a sum!

Plus without saturate fats in your diet you can't assimilate the vitamins out of the food as vit d is fat soluble where as vit C is water so they need either water or fat for the body to be able to get them without them they pass through the body

Fightingwithdad profile image
Fightingwithdad in reply to

Interesting! It's so true, everything has a knock on effect. DR's tend to only look at one issue in isolation. Surgeon once said to me he would only do a knee replacement if my knee pain was bad enough, not because I had excruciating back pain..at that stage my knee had locked at 45 degrees, and I had a very bad limp, so yes my knee needed replacing, but he wouldn't accept that it was causing severe back problem.

crackersgem profile image
crackersgem

I have started statins, as my level was 9.7, which is very high. I haven't noticed any difference in my pain levels, just as bad as always. I also have rhematoid arthritis.

Fightingwithdad profile image
Fightingwithdad in reply to crackersgem

That s good, but as you say, your pain is bad anyway!

crackersgem profile image
crackersgem in reply to Fightingwithdad

Yes, my pain from fibro and arthritis is always bad, but the statins haven't made any difference to that, thank goodness.

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