Fibromyalgia with excruciating leg pain can someone help

[Artgirl]

Statins!

 

[Sibergirl]

No. I’m not on statins. My cholesterol is good but once it was high and they wanted me to take them. I said no specifically because of the muscle pain side effects I’ve heard about. Thanks for the thought, though.

 

[Gardener]

Hi everyone I am new to here and I'm trying to look for some answers. I have been dealing with fibromyalgia for about 20 years or more and also this pain in both legs for the last 7 or 8 years I have been getting these leg pains in both legs on my calves and the back of my knees, there also swelling and now has radiated to the back of my thighs. This pain is like a dull excruciating aching pain that can last from a couple of hours to 24 hours, it's everyday pain It's on both legs at the same time. even laying down elevating my legs the pain does not go away One doctor diagnosed me as restless leg syndrome and I know it's not that because I read on restless leg syndrome another doctor says it's neuropathy then another says it couldn't be neuropathy I cannot get any answers I am so tired of this pain having to deal with fibromyalgia and this chronic leg pain for so long it's getting to me. I know there's no cure for the fibromyalgia but I need to find answers to what's going on with my legs. A little bit about myself I am 61 years old and I took on taking care of my granddaughter since she was 9 months old she is now five years old and I have adopted her 2 years ago. She's a great little girl she actually bring me my ice packs and my little stimulator when she sees me in so much pain she grabs my gloves and my topical cream just a great girl and it saddens me because I wish I could do things with her like taking her to the park or to a movie, but I'm always in so much pain. I also suffer from cervical and Lumbar pain and I have osteoporosis as well. The only meds I take for my pain is the hydrocodone my doctor wanted me to start the medical marijuana to see how I would do on that because I've lost so much weight and I can't sleep so I finally decided to after him telling me about 2 years ago. I could not get it right of how to take this I've tried the brownies and the marijuana itself but I just could not do this right and having a child there was no way I could be high and sleepy and having to take care of her properly, so I told my doctor no more. There are days many days that might pain meds don't work for me I have tried different meds for the fibromyalgia but I always had some type of reaction or allergy and couldn't take them but my thing is that I don't want to mask this pain I want to know what it is that is causing this pain there has to be some answer, the only good news that I have is that my rheumatologist has stepped in and his ordered ultrasounds MRIs and x-rays and the nerve conduction I have not done any yet but I am so glad that she is going to try and help me . If there is anyone out there that may be going through the same and I am suffering please help me I would appreciate any info advice you may have. thank you.

Look into LDN. Dr. Sami from Torrance memorial hospital introduced me to it. I had fibromyalgia for decades. I had one dosage adjustment from 4.5mg to 9mg and that knocked it out in two months. It’s been almost a year symptom free.
I use to wake up miserable and in pain and now wake up feeling great. LDN Trust website has a lot of info. Good luck.

 

[asmyguitarweeps]

I have similar leg pain and so far they've chalked it up to a spine issue which doesn't make any sense. Half of the medical professionals are just incompetent, and the other half simply don't have the knowledge they need. It's a losing battle. I feel for you.

 

[DebMarPir]

Are you on statins? The doctor put me on statins for my cholesterol and someone mentioned that maybe my pain was coming from that. I stopped for three days and the pain went away.

I just saw this post, because I was searching to see if anyone else had statin use issues. I've been on them for years, having had very high cholesterol thirty years since even college age. But now with all the muscle pain, I also started getting muscle spasms, rather violent, and numbness in my hands. I went off the statins, thinking perhaps the pain was related. To be honest, I felt better but don't know if this was because I went off the statin or because I went on the gabapentin, or both. My doctor is now trying me on a different statin every 2nd day but being chicken, I am doing it every 3rd day and not feeling as well, but it is only my first or second try, not even a week yet. Did you learn any more? Anyone else here had a statin issue that led to pain, spasms or neuropathy? I was having to rule out MD and everything.

 

[JayCS]

Hi Deb, I know statins fairly often cause / increase muscle pain, but haven't read about spasms or numbness. Just checked NHS and mayo clinic and they say numbness yes, spasms no, and stress the nocebo effect that many get pain cos they believe they will, as I've also read in recent studies. They say statins are very effective, which is contendable: according to recent studies it depends how many other risk factors you have: plaque, bad events. They are however also anti-inflammatory, so not 'all bad'. But they and all the evidence are controversial, same as lowering cholesterol is.

To me it firstly sounds more as if spasms/numbness were stopping due to the gabapentin helping. You wouldn't try stopping the gabapentin tho?
Nice of your doc to try various statins. Wouldn't call it being chicken to try each a bit longer than 2 days, that's very personal. You may know your body best...

I stopped taking atorvastatin a few months ago and tried to compensate with loads of supps for lipids and inflammation, supporting my strict Mediterranean diet, which hasn't seemed to help much tho: LDL, triglycerides and lipoprotein (a) have all gone up. All the same, my cardiologist recommends me not to even think about restarting them until my severe jab-problems are better. She checks me regularly and everything is working fine, plaque isn't increasing, that's making me feel safe.

 

[DebMarPir]

Actually, spasms are indeed a side effect of statins. Not common, so not listed everywhere, but you can find it pretty easily online. Whether it is the kind I had, we don’t know. The Gabapentin saved me by holding them in check, literally. As they increased, my doctor and then ER increased the Gabapentin as I felt it helping and I am pleased to say after weeks/months they are more or less gone. I sometimes still have a little in my right hand. Numbness is also linked to statins, I have a medical article on this I discussed with my doctor. My numbness also disappeared. It was a bit scary.

My Dad was an internist/cardiologist, rest his soul. He and my Grandfather both had heart attacks at 59. I will be 55 in May and on my way there if I don’t lower my numbers. They are not just elevated without meds, they are exploding. Genetics. I don’t find cholesterol issues controversial because of my family history. I was on other meds but sadly now only statins apparently are the most reliable in the studies. I don’t feel right, I have had a flare 5-6 days and quite a bit of pain since I took one pill and am afraid to take any more. I know that may not be definitive and I am afraid of a heart attack but think I need to explore other options. Back to the internist I go.

 

[JayCS]

Hmm, yeah, as I said, I did find the numbness connection. Whilst spasms aren't completely unlikely, but seem to be very rare. Of course we can find almost "everything" as a side effect of any med online. On the other hand I do sometimes get the rarest of side effects, which I have then found thru 'research', but I'm diligent about watching if it really was what I think it was. I was more right than wrong. So I'm with you there if you believe after analyzing thoroughly that the spasms were linked to the statins. But could you name where you found it online? As you put it as a question and are now answering it, you seem to have found something during your 'research'(?)
I spose mine might be called 'exploding' too, at least lipoprotein (a) varies between 3 and 4x the normal maximum, the others most of my docs would want to see at a third of what they've now gone up to. Similarly genetics and family history here too. However just cos it runs in 3 blokes of my family to me doesn't mean that it isn't controversial generally. The battle is on amongst researchers today, isn't that a different situation to when our family members had their CVD, and with different meds....?
Also with 'controversial' I mean things like the amount of plaque (my cardiologist checks every few months and is very pleased) and to the problem that statins may be some of the "best" things we have, but in absolute numbers they etc. do not necessarily make much difference to actual cardiovascular events. I am still taking it extremely seriously, but feel safe in the hands of my cardiologist and am also trying to work at it using supps. As much exercise as possible and perfect diet anyway: Are you on a strict Mediterranean diet too?
And do you know of ezetimibe? Seems perfectly normal here to combine that with statins, I was on that too, and quite a bit of recent research supports that combination.

 

[Auriel]

I’ve never heard of compression sleeves before @FibroCFS_Jeff, are they like them socks they put on you after operations to prevent clots? There’s been a bit of posting about weighted blankets (I didn’t like the sound of them at 1st cos I don’t like heavy blankets on my legs) . . . . . but then I had look into them and they sound like a nice thing for to own

 

[JayCS]

I don’t like heavy blankets on my legs) . . . . . but then I had look into them and they sound like a nice thing for to own

Hey Auriel - I hated the heavy blankets test (after the first half hour) and concluded weighted blankets aren't for me.
Then trying my wife's saw the test was right... But of course they're right for some. (BTW cf. Temple Grandin's "hug machine"...)

 

[Auriel]

Aw hugging things I love the sound of that, (long as it’s not a robot doing it that’ll freak me out) I”m gonna look more into it, thank you for knowledge imparting @JayCS ( i’m learning so much I think my system’s gonna short circuit soon!)

 

[Nan]

Hi and so sorry to read your letter but as I was reading I thought it was my letter I’d wrote so I can’t help but will follow with great interest. Sending you love and hugs and I think you are so beautiful for adopting your grandchild. All the very best. x

 

[Creola17]

When my legs and feet were swollen I went to alternative doctors who had me change my diet. I no longer eat sugar, grains or dairy. Also nightshades but that's because of hasimotos. The swelling went down and hasn't come back. It's worth a try since pills always cause other problems leading to more pills. I really hope you find something that works for you. It's been 6 years and I was doing pretty good but now I have arthritis in my shoulders and hips so I use marrijuana. RSO helps with the pain and helps me sleep. We also made a tincture that has both cbd and the in it. I feel a little sleepy but can get alot done. We grow our own food so I'm very busy.
Also try a tens unit, they can really be helpful. I've seen a massage gun that supposed to help so might get that too.
Stinging nettles is a good way to treat inflammation. It's a delicious tea with a little orange peel.
You have to research and be willing to try different things.
Supplements can help too.
(((gentle hugs)))

 

[Nan]

Thanks. Can I ask where you get marijuana? That is what I would like to try for sleeping without being disturbed by pain. Iv hurt my spine again so got to deal with more pain. I get so fed up at times. It’s 4am and I’m tired now hope meds get me a couple more hours sleep. Take care. X

 

[sunkacola]

Thanks. Can I ask where you get marijuana? That is what I would like to try for sleeping without being disturbed by pain. Iv hurt my spine again so got to deal with more pain. I get so fed up at times. It’s 4am and I’m tired now hope meds get me a couple more hours sleep. Take care. X

Hi Nan,

I don't know where you live, so I don't know if it is legal in your area. If marijuana is legal where you live, you can just go to a dispensary to get it. If it is only legal for medical purposes, you need a doctor to sign paperwork in order to buy it. If it is not legal at all, of course you won't be able to get it. You can't buy it online.
Best of luck to you...