Fibromyalgia with excruciating leg pain can someone help

Dedegurl59

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Joined
Jul 6, 2021
Messages
4
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.
 

Rhyl

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Aug 15, 2020
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43
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Undiagnosed
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00/0000
Country
US
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KY
Why don't you think you have RLS? I think it is different for everyone - wondering if you have tried any meds specifically for that? Have you had any tests for circulation? Sounds like your doc is going to be helping you figure out what's going on. That's great!

I also have pain in my calves and thighs, although no swelling. I take Mirapex, although I did finally get to the point where I don't have to take it every day.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi Dedegurl59,

I'm so sorry you're going through all of that - it sounds like you've been having a really tough time.

Are you seeing swelling over the whole of your legs, or just around your knees? From the sounds of it, there are so many different things that could cause this. As far as I have always understood, swelling is not a symptom of fibromyalgia - many of us experience various co-conditions that can add other symptoms into the mix, but fibro itself isn't supposed to cause local swelling. That makes me think that going all-in with your rheumatologist to try to get to the bottom of the issue is a really positive thing to do.

I was experiencing mild edema (puffiness throughout my body, but mostly in my lower legs) and found that a boswellia supplement helped. For something more extreme, I'd be really keen to figure out the underlying cause - which I never managed to do. I can imagine your frustration in not knowing whether your leg pain is from the fibro or something else. I hope you manage to shed some light soon!

If you haven't already (which you probably have, after such a long time, but I'll say it anyway!) definitely try approaching your fibro from a broad management and psychological standpoint - the idea is to reduce stress, which will in turn help your body's systems free up helpful resources. Stress tips our brain chemistry away from healing and into inflammation, which can have knock on effects all over the place. You can go and have a read of Sunkacola's pinned post at the top of the General discussions section for an overview of symptom management - perhaps something in there will help you in a new way. Figuring out your own unique management can be so powerful, because it can reduce pain at its root, rather than trying to deal with the fall-out - as painkillers do.

Whatever happens next, please keep us posted 🌷
 

Sibergirl

New member
Joined
Jun 6, 2021
Messages
4
Reason
DX CP
Diagnosis
05/2021
Country
US
State
GA
@Dedegurl59
Hi, this is my first time posting, other than having introduced myself. I don’t even know if I have fibro. No one knows yet. But what started this whole medical odyssey was excruciating pain in the area of my piriformis muscle that made my legs either burn, or feel like I was on a rack being stretched with just aching that would not freaking stop. This is no mere piriformis syndrome.

I just wanted to say that I can relate to what your going through and I’m so sorry. What’s helped me be able to actually live my life again is Tramadol. However, since January 2020. I have had 3 MRIs (1st left hip & lower lumbar spine, 2nd right hip, 3rd sacroiliac joint/pelvis), seen about half dozen specialists, done a few med trials, injections, and many X-rays. I’ve had tons of bloodwork done, and repeated, while looking for a good rheumatologist (which, praise God) I have finally found. The blood tests come back both times as positive ANA and Rheumatoid Factor but very low. All other blood tests were perfect. So, my new rheumatologist is considering me as positive for autoimmune disease just non specific at the moment. 🤷🏻‍♀️

Without the Tramadol, my hips, butt, thighs and calves are so achey, feel so stretched, or like someone is driving a nail into the middle of my butt cheeks and the pain radiates through my quads and hamstrings. It isn’t sciatic pain. I had that when I was pregnant with my second son. The pain I deal with, when not on meds DOES. NOT. STOP! So I understand feeling exhausted from pain and the hopeless feeling that comes from it.

I had been dealing with a low level Piriformis issue for a decade but a few stretches and an ice or heating pack and I was good. This past Fall it kicked into high gear out of nowhere. I just racked it up to getting older. I turned 55 in April. According people just out in the world I don’t look 55 (which is cool I guess because I feel 95) and I’m in pretty good shape; ’ 5’7”, 148lbs. So, I knew it wasn’t being overweight that was causing the issues.

But on Christmas night (2020) the pain had become so horrible that when everyone went home I went up to my bedroom and just sobbed. I freaked out my husband and daughter. i guess I’d been doing a great job of hiding/ downplaying the pain. My husband was heartbroken to see me that way, as was our daughter (the youngest of 3 kids). They had me calling and leaving a message at my docs office the next day. The earliest I could see a specialist was Jan 13th. I took it. That’s when I got Tramadol and when my roller coaster ride of specialists and a diagnosis began.

I wish you the very best of luck. I hope that you can find someone who will give you some thing it’s just ease the pain. I don’t know if tramadol will work for you or if it’s even a drug that you want to take. I don’t have swelling like you do, but your pain sounds so similar to mine. They’re talking about possibly putting me on gabapentin next and I do take a very low dose of amitriptyline, 20 mg a day. Whatever I had has kicked my menopause induced insomnia inti high gear, and I have to take Xanax to sleep. We’ve tried every other sleep medication, and they don’t work. I’m still looking for answers and still looking for a diagnosis. The Tramadol is allowing me to live with less pain but my family, and my Catholic faith are what’s keeping me sane.
Again, I am so sorry you’re going through this. So sorry.
~Rachel
 

Dedegurl59

New member
Joined
Jul 6, 2021
Messages
4
Hi everyone, I want to thank you all for the advice and all the things that I can look into as far as talking with my doctor about. At this time I do not take any meds for my legs. I've been taking gabapentin for my neuropathy since 2011 after my laminectomy. I have an upcoming appt for an MRI on my lower back and an ultrasound on my ankles and legs. Never had this one done before. Hopefully i get some answers.
The pain that i suffer from is muscle and the swelling I get is mainly in my calves. The pain is very different from the fibromyalgia pain that I feel so I know there definitely is something else going on with my body. However I do not feel any pain in my buttocks just in the calves and thighs. It seems like also when i have my legs elevated the pain becomes more intensed, pain starts when im standing for 5mins or more, sitting or walking and laying down. it is also like as if someone is just stretching my body from head to toe. I was also on amitriptyline and lexapro and a variety of other meds including depression and anxiety but i stopped taking them. Nothing was helping and yes i know stress can cause so many things to harm the body and i can't get away from it. Although i do find the calmness among the storm in reading my bible, it really helps my stress levels most of the time. I'm going to look up on google for some of the things you all were mentioning so that i can familiarize myself and speak to my doctor about it at my next visit. Thank you all so much for your input, i truly appreciate you all.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi all,

I'll just add in here a quick warning. I know that finding something that relieves pain can be life changing, but please do be wary of Tramadol and particularly other stronger opioids. A couple of studies have now shown that while opioids like Tramadol can relieve pain in the short term, they can actually make fibromyalgia worse in the long term. A quote lifted from a Guardian article about chronic pain conditions:
They can also make chronic pain worse. This is because opioids provide relief by blocking pain receptors but your body responds by increasing the number of pain receptors, meaning you need higher doses to get the same relief. In chronic pain conditions such as fibromyalgia, people have already been producing natural opioids called endorphins, which bind to the same receptors. “Giving them an opioid is like throwing kerosene on to a fire,”Clauw says. (a professor of anesthesiology, medicine and psychiatry at the University of Michigan)

So, proceed with caution 🌷
 
Last edited:

Sibergirl

New member
Joined
Jun 6, 2021
Messages
4
Reason
DX CP
Diagnosis
05/2021
Country
US
State
GA
@Dedegurl59
Please keep us posted as to what happens with you MRI. Like I said, I have no idea if I have Fibro, I do know I have Chronic Pain. I know you said the pain you’re dealing with is different from your Fibro pain, so you are correct to be concerned. I hope you get an answer with your MRI. I have that same feeling of stretched from head to toe, and the pain in my calves is nuts. Certain activities set them off so badly that I can’t walk for a few days. So, I know that what you speak of is excruciating. I’m glad reading the Bible brings you peace. You’ll be in my prayers.
-Rachel
 

Dedegurl59

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Jul 6, 2021
Messages
4
Thanks Rachel, i will keep you all posted and in my prayers. Yeah the same for me like today did laundry where i actually hang clothes outside and for the next few days i will be totally wiped out hanging onto the counter tops and walls. There are times where i literally crawl from one room to the next because I am afraid of falling due to the osteoporosis. I too wish you well with all my heart. God bless
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
288
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Dedegurl59, 1st off welcome to the forum here a cup of tea 🍵 and a biscuit 🍪 when children are older they remember how they were treated ( or not treated ) and what they felt around the people who raised them we have memories of things and places but that’s not the main thing I know for sure that if it wasn’t for my nan and grandads influence growing up I’ve no idea what I would have ended up like iif they weren’t involved, it was the only safe and peaceful place I had , I love how you described you and your granddaughter it painted a lovely picture , I’ve had fibro for 15 years I get it worse in my legs I have lower back pain too , some osteoarthritis and thyroid , I don’t like the sound of the swelling in your legs but they are doing tests which is good , I’ve never been aware of leg sweliling connected to fibro , I’ve not experienced it anyway, but you’ll get a lot of support , hints and tips on this forum 🌼🌸🌼
 

Dedegurl59

New member
Joined
Jul 6, 2021
Messages
4
Hi Auriel, thanks for the tea& biscuit🤗. Abrielle is her name and i tell you honestly she has given life back to me when i was going thru so much depression. My reason to push forward and i thank God for her.
As for the swelling in my legs I don't believe it is related to the fibromyalgia this is why I know there is something else going on because I've had fibromyalgia for a couple of decades and this swelling just started like seven, eight years ago. One night i went to the emergency cause the pain was so severe and they said the cause was that because my Dr had changed the dose of my statins and that i was allergic to statins it seemed to be it but after a couple of months it started right back up but worse. So idk but i pray i get some answers soon. Have a blessed day
 

FibroCFS_Jeff

New member
Joined
Jul 21, 2021
Messages
5
Lots of great advice on here! Glad to know I’m not alone. I know everyone is different but what has helped me the most is wearing compression sleeves. I have some for my calves, some that cover knees and calves and some full leg compression pants. I find myself wearing some version most nights and during days when leg pains peaks. I also take lots of magnesium.
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
288
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Dedegulrl69i hope you get answers soon too, it can’t be nice to be in that kind of pain all the time fibro is annoying enough without extras, anyway you take care, abrielle too let us know how you get on with the tests and things x x x x x
 
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