Horrible leg pain with fibromyalgia

Posted by fearless @fearless, Jun 6, 2012

Lately, I have been having terrible leg pains I think are associated with my fibromyalgia. Has anyone else experienced this? Also, because of my pain and fatigue I am unable to lose weight which is another downer on top of everything else. Any suggestions for that? I really am feeling rather defeated lately by fibromyalgia and my depression all tied into one.

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@deborahv

hi i have used the epsom salt bath tub soaks. the baths do help with the leg cramps and stiffness. i try to do it once a day. not each 15 min all day long but 15 minutes once a day.
i dont find that it helps all the time.
stretching helps and i also use tizazidine for muscle spasms which help my legs very much. for me my legs seem to be the worst part of the pain
also the gastro part of the spasms which i didnt know was part of the fibromyalgia until i went for a consult at cleveland clinic.
i wish i would have chosen mayo clinic.
at that time i just chose who was closest and didnt know that may clinic had so much more information about the illness

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Hi all : I’ve been living with behcets since 2005 didn’t get DX for 3 year l it cause inflammation in your blood system. So I’m in pain allways I have had ulcers everywhere abdominal,mouth,vv,skin Ect. I ended up in hospital with medicated diabetes I had to fight for 2 years! I’m in pain alway ! I was DX with so mush and finally fibromyalgia about 5 years ago. Anyways I do the epsom in the bath but what really worke was I would pour an product called BLU It’s in the first aid alcohol,camphor, eucalyptus..it really work you pour it on body let it dry thanks LEE❤️

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@leemayle

Hi all : I’ve been living with behcets since 2005 didn’t get DX for 3 year l it cause inflammation in your blood system. So I’m in pain allways I have had ulcers everywhere abdominal,mouth,vv,skin Ect. I ended up in hospital with medicated diabetes I had to fight for 2 years! I’m in pain alway ! I was DX with so mush and finally fibromyalgia about 5 years ago. Anyways I do the epsom in the bath but what really worke was I would pour an product called BLU It’s in the first aid alcohol,camphor, eucalyptus..it really work you pour it on body let it dry thanks LEE❤️

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Hey @leemayle and welcome to Connect! It sounds like quite the journey you've had with being diagnosed with fibromyalgia. I hope things have settled down for you and you can focus on pain management now. Are you doing anything beyond epsom baths and BLU application to help with the pain?

I'm also bringing in @lioness, @carolcunnyngham, @sandytoes14, who also have fibromyalgia in hopes that they can provide some tips with how they've dealt with the pain.

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@TonyHart87

Hey @leemayle and welcome to Connect! It sounds like quite the journey you've had with being diagnosed with fibromyalgia. I hope things have settled down for you and you can focus on pain management now. Are you doing anything beyond epsom baths and BLU application to help with the pain?

I'm also bringing in @lioness, @carolcunnyngham, @sandytoes14, who also have fibromyalgia in hopes that they can provide some tips with how they've dealt with the pain.

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@leemayle Welcome to connect . Thanks Tony I,ll try. Ive had fibromyalgia since sometime in the 90,s I do naturel things . The Epsom salts before I go to bed for a better sleep and no leg cramps also are you drinking enough water ? You should have at least 8 glasses a day . Especially during your evening meal . Get enough magnesium in your system for us with fibro you need more mag. then the normal but have your labs checked on mag and VIt D3 . There's an old remedy for leg cramps that works and that is as soon as a cramp starts drink dill pickle juice or eat mustard . Its the vinegar that helps . You can also use a washcloth soaked in E.S or vinegar and apply to your cramp. Doing Isometric exercises will help . When I first was diagnosed with fibro I went to a class on this and this is what they said of course doing your stretching and light exercise everyday is a must . Hope some of this helps you In the beginning I was put on Lyrica had side effects I didn't like Last was Cymbalta that for me was horrible but some people use it and have good results.

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@TonyHart87

Hey @leemayle and welcome to Connect! It sounds like quite the journey you've had with being diagnosed with fibromyalgia. I hope things have settled down for you and you can focus on pain management now. Are you doing anything beyond epsom baths and BLU application to help with the pain?

I'm also bringing in @lioness, @carolcunnyngham, @sandytoes14, who also have fibromyalgia in hopes that they can provide some tips with how they've dealt with the pain.

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I too have had some pretty significant leg pain the past few months from fibromyalgia and am wondering what BLU application is? I just get up and down all day long to try to ease the pain.

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@migizii

I too have had some pretty significant leg pain the past few months from fibromyalgia and am wondering what BLU application is? I just get up and down all day long to try to ease the pain.

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@leemayle Is the "BLU" you're referring to ISO-BLU, the topical analgesic, that is helping with your pain? How often do you use it and how long does it provide relief?

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@timc

A few things– take 15 minutes bath soaks with about 1 to 1 1/2 cups of epsom salt. Get a hand held massager and massage your legs daily with it. Try biofreeze or a similiar product and apply to your legs. I am a lic. massage therapist certified in medical massage. Glad to answer questions relating to fibeomyalgia.

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reall hard to even get right leg high enough to get into a tub. I use a walk in shower, so I don’t have any advice to help you but my heart is with you. My terriable pain started after I tore my right shoulder AC joint but when they went into take spurs and find other problems they had to take part of collar bone. I had just got the job of my dreams and my company tried everything to keep me employed but after about 3 years of trying to keep me employed, the Fibromyalgia kicked into high gear and seemed was off more than I was their. With the family care act and having a great company to work for and I did have a profession that very few people knew about let alone how to keep the maintain end up. This happened in the early part of the 90’s. They worked with me till 2000 Feb of that year. I had so much pain not only from the Fibromyalgia, had herniated Disk in neck(cervical) XRay’s only showed narrowing and when I finally got a Dr to get me to a MRI they then say all the trouble with neck. When we came to help Dad take care of Mom after she broke her hip, My wife and Son had to do the lifting but we were here when Hurrican Charliee hit Punta Gorda and Charlotte Harbor in 2004 of August, luckless we were here at that terriable on 8/13/2004. After the hurrican I was trying to help Dad clean up the yard and was pulling limbs to front so county would pick up I had one of my dizzy spells and fell and broke my right forearm and a congintal birth defect that I never knew about that caused a growth between bottom of lumbar and sacrilick joint that broke and caused a herniated disk there. So since then has gotten so much worse, it has now causing so much pain in right but and leg, so much to right shin area calf . Now hurts to the point that burns bad on right shin when I drive, just the slight pressure on gas and break peddle makes it real hard to drive unless I am on Interestate with not much traffic where I can use cruise control. So my Doctor thinks that a spacer between L4 & L5 would help a lot. Mainly cause when I use my Fathers walker by leaning over the walker just that small amount really does relieve most of the pain in right but and right leg, especially the shin area, calf. I wonder if anybody has had good or bad results. I have heard both but so far seems about the same, good and bad, not just that but the extremes of good and bad. Anyway as far as the Fibromyalgia after 20 years of nothing but constant pain all I can say is I hope you have better luck than me. By the way this started when I was in high school my Senior year. Aprial of 1970 after a guy hit my 65 year Mustang he was going 55 and I was stopped at a red light. He hit me so far that the Tractor trailer driver that missed me said he didn’t know how he missed me and swore there was 2 people in my car but I was the only person in the Mustang but he kept looking in the ditch and weeds for along time. Just saying.

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@TonyHart87

Hey @leemayle and welcome to Connect! It sounds like quite the journey you've had with being diagnosed with fibromyalgia. I hope things have settled down for you and you can focus on pain management now. Are you doing anything beyond epsom baths and BLU application to help with the pain?

I'm also bringing in @lioness, @carolcunnyngham, @sandytoes14, who also have fibromyalgia in hopes that they can provide some tips with how they've dealt with the pain.

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@leemayle I was diagnosed with fibromyalgia in 2012. I believe that I had it for 25 yrs at that point. For pain, I have been on most of the "approved" drugs at one time or another. Savella/milnacipran, Lyrica/pregabalin, Cymbalta/duloxetine. My current regime is Cymbalta 30 mg once a day, Lyrica 75 mg 3x day,10mg medical marijuana twice a day. Leemayle, how is your sleep? It is so important to get a good night's sleep. Some nights I count sheep and then get up out of bed if I can't fall asleep. The other members here on Mayo Connect have shared how they distract themselves from pain. You can check out the discussion here https://connect.mayoclinic.org/discussion/what-distracts-you-from-the-pain/?utm_campaign=search

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@leemayle Oops! I meant to also give you a website that I found as a great resource for Fibromyalgia Have a great weekend https://fmaware.net/fibromyalgia-treatment/

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What type of pain are you having in your legs? I have fibromyalgia, arthritis, ankylosing spondylitis, and scoliosis. I have lived with chronic pain for about 40yrs, since I was around 20yrs old. I have had different kinds of pain in my legs-like super burning pain,like having someone hold a fire on my leg. I take gabapentin for this neuropathy pain. The next kind of pain began around my hip area and went up my leg to my back and down my leg to around my ankle. This is sciatic pain. This is one of the most horrendous pains I have had, and actually goes from the back, down through your butt, and then your hip,and then leg. The only thing I could do to help my pain in my butt was to sit on my hand. No one can understand this pain unless you've through it. I'm not sure you want to tell me, but I was curious as to what you weigh? I started my weight loss journey (yes it is a journey) in 2006, and I weighed right around 600lbs. I started on a low-carb/high protein diet, and in 18mo I had lost 200lbs. Then in the next 9mo, I gained 50lbs, and in the next 3 1/2years I lost 20lbs. So, in 2012 I had gastric bypass surgery, and lost around 250lbs, and I lost all my weight not being able to walk. Over the years since my gastric bypass, I have had both knees replaced, both hips replaced (with my right hip I had 2 dislocations, and got an infection in my hip, so altogether I had to have 7 surgeries on that hip and spent around 2mo in the hospital), and after being able to go home, I then after all that I ended up with a blood clot in my right leg, so I had to go back to the hospital for another week. I also had my right shoulder replaced. I have also had abdominal surgery to remove my excess skin, and I had to have abdominal surgery for an internal hernia where my small intestine was bunched up in a small space and causing severe pain. For the last couple years I have been struggling with my weight and have gained probably around 50lbs. I am just telling you all this to let you know that I can certainly relate to what you are going through and how you are feeling. I have depression and take meds for that, and I continue to struggle with my weight every single day. I deal with depression a lot because of my pain and because I don't sleep very well at all. One of the biggest problems I have is the changing in the weather. Everytime the barometric pressure changes my body screams out in pain. The colder it gets, the more I hurt. If you would like to stay in touch, I would like that because I know that depression and pain are easier when shared with another person who understands. I hope that this helps you some. God Bless You!!

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Yes, I have experienced terrible leg pains recently. The back of my upper thighs are "singing" all the time. When I wake up, I am so stiff, I can hardly move. I have severe fibro along with arthritis throughout my body. I still do my daily walks, but it makes me experience lots of pain. I know if I don't move, it will only get worse. I have tried medications, but found that I am very sensitive to over 43 of them. I have also had over 30 surgeries (both major and minor). I am hoping when I am finally able to see the neurologist, she will have some suggestions.

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@bookahol

Yes, I have experienced terrible leg pains recently. The back of my upper thighs are "singing" all the time. When I wake up, I am so stiff, I can hardly move. I have severe fibro along with arthritis throughout my body. I still do my daily walks, but it makes me experience lots of pain. I know if I don't move, it will only get worse. I have tried medications, but found that I am very sensitive to over 43 of them. I have also had over 30 surgeries (both major and minor). I am hoping when I am finally able to see the neurologist, she will have some suggestions.

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@bookahol Im so sorry you have so much pain . I also have fibro, arthritis all over 2 fractures and my thighs burn in pain all the time I cant do any meds as Im to sensitive to them So have you tried Epsom Salts? I use this and it really does help on my thighs, legs . Also just hot water which opens up the blood vessels and helps with the pain in muscles. Ice, heating pad have you used all these tools to help when I go for a walk daily I do take my pain med 20 minutes before I go out . Hope you find something to give you some relieve . Dont do any strenous exercises just stretching and light exercise .

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Thanks for the reply. Unfortunately I am not able to soak in the tub, so the Epsom Salts will not work. I do use ice and a heating pad. I have had no luck with pain meds. In fact two of the meds on my list caused me to either stop breathing and/or have dry heaves. I guess I am not a good candidate for medications.

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