Can anyone help me please: HI, I have... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Can anyone help me please

geniebeanie profile image
23 Replies

HI, I have been diagnosed with Fibromyalga I'm not so well The worst is like really sore pins and needles in my leg muscles. They are getting worse Also my legs are refusing to walk after a few steps It has gotton worse over a 3 year period. I want to walk its not physical just no strength in my muscles Does anyone know what I can do or take tohelp my legs come alive again Please help if you can help any advise

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geniebeanie
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23 Replies
DanielleGemma profile image
DanielleGemma

Hey,

Have you tried swimming? I use to go three times a week (with someone I trust and I'm close to - moral support and help if needed!) I got a float so I didn't have to use my arms and get ready tired and I paddled in the shallow end as much as I could. Then I would hold onto my partners shoulders and they would pull me along and I would just try and move my legs. Tired me out completely but I felt like I had more movement in my legs. Hope this helps

💜🦋

in reply to DanielleGemma

Hello I do this too it helps plus it's gets you out for a while

geniebeanie profile image
geniebeanie in reply to DanielleGemma

Hi I have put my name down for the Hydro pool They said I should hear from them soon I'm hoping it wont be that long. Thanks for your help I appreciate Take care

Al10 profile image
Al10 in reply to DanielleGemma

Ooh yes floats are great aren't they? Even for those that can swim. It is so easy to work our muscles too hard when swimming proper. Just don't overdo and get cold else that lovely splashy time is spoiled by a rotten fibro flare!

bluebell99 profile image
bluebell99

Hello geniebeanie and a warm welcome to our friendly fibro forum where you can find help, understanding, support and advice.

Have you seen our Mother Site fmauk.org ? Here you will find a wealth of information about everything fibro, including guides and links.

Is your doctor aware of your difficulties in walking? Perhaps this needs to be investigated further. Unfortunately, due to lack of time, empathy, or ignorance, some doctors are quick to dismiss new symptoms as "It's only fibro", which is not at all fair and can lead to neglect.

If your calf muscles need building up, have you tried an exercise bike? Not the large ones you sit on, but the smaller ones you can pedal whilst sitting on a chair. You can buy them for about £25 or even cheaper if second hand. They can also be put on a table and used to build up your arm muscles too.

If you can go swimming, this is an excellent exercise which is non weight bearing, and can help relieve symptoms all over the body, by releasing feel good endorphins in the brain.

Are you on any medication for fibro? If so, it might need tweaking and if not then maybe this is the time to ask for help?.

Hoping to see you around the forum.

Kay

geniebeanie profile image
geniebeanie in reply to bluebell99

Hi thanks for your reply. Given what you and others have said here I'm going to go back to my Doctor. I do not get any Meds for it at all just pain patches. I'm down on a list for a Hydro pool here in my town so I hope to get started soon. I'm bit self aware about as Ive put on weight do to lack of exercise but I will go. I think I need to be investigated about this as my legs are physically ok they only wont work. Over time its getting I'm able to walk less and less. I do try and end up sitting all over the place in my nieghbourhood if I go out. Thanks for the welcome to me, Your ideas are good and I will really get one of the exercise cycle thingy. I'm glad and feel a bit better in myself that I contacted your group You have all contributed to me feeling some hope in getting some help and advice Cheerie Bye

Hello GenieB Well let me tell you I know exactly how you feel and the pain you describe as I have this now myself and others on this foram do also, My advice to you is to massage your legs with a good massage cream and I mean a really good massage for around 20 mins then if you buy your self some of those long elasticated bandage stockings the largest size , try these they should help you There is another cream you get from your Doctor is Fenbid Forty 10 MG Its gell I use this and it helps , Try wearing flip flops I do this and some how it seems to ease the pain I'm not a doctor so you have to decide But codrydamol from your Docter area good pain killer and are not so bad for the body as morphem and tramodol I believe that you will get tips from a lot of members on this foriam Some people decribe this foram as wonderful and it is But I believe it's a place we're you can get good advise from members that understand you and do have this awfull condition called FIBROMYGIA Good luck Gienie 😉

geniebeanie profile image
geniebeanie in reply to

Hello A lot of thanks for the advice This is a wonderful Forum given the replies and advice I have been given including your own and so promptly. Good luck to yourself as well. I will heed your advice and everyone elses as well Bye GB

ErosisSore profile image
ErosisSore

Hi geniebeanie, I was officially diagnosed last year but have had pins and needles in my feet for a year and a half 24/7 ! It has now crept into my legs all the way up to my groin, from fingers, up my arms and across shoulder blades. All my muscles have weakened and I can hardly move my right shoulder and that side of my neck. All my blood tests have said that I'm not deficient in anything. I've tried various medications like amitriptyline, duloxetine, naproxen and ibuprofen but I have problems with all of them and have had to stop taking. I've now been on Gabapentin for 2 months and it is not doing anything for my pins and needles and pain. I think it may be time to ask to be referred to a neurologist as suggested by rheumatologist and podiatrist as I think there may be something more happening. Or is this normal for fibromyalgia for my body to never rest? It would be nice to find out, but again it's getting a doctor to listen to me. I too used to love walking for miles every day and across country at the weekends at fast pace. I'm like a snail now and I understand how you feel and how upsetting it can be. You say that you have been diagnosed now so you need to try and discuss medication or even tests with your doctor and I hope that you have a sympathetic and understanding one as I know how hard it can be to get them to listen.

All the best

Jo x x

AnitaK profile image
AnitaK in reply to ErosisSore

Symptoms are very similar to mine.No 1 understands do they.Feel so uncapable

TheAuthor profile image
TheAuthor

Hi geniebeanie

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

I am so genuinely sorry to read this my friend, and what you have described could be Fibro related but it sounds more like paraesthesia to me. I have pasted you an excerpt and a link to the *NHS Choices cache on this issue:

*Pins and needles (paraesthesia) is a pricking, burning, tingling or numbing sensation that's usually felt in the arms, legs, hands or feet. It doesn't usually cause any pain, but it can cause numbness or itching. Pins and needlesis usually temporary, but can sometimes be long-lasting (chronic).1 Apr 2016

There are numerous causes of parasthesia from Raynaud's disease to anxiety and stress.

nhs.uk/conditions/Pins-and-...

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

geniebeanie profile image
geniebeanie in reply to TheAuthor

Thanks very much for your reply. I will look at the link. Also thanks for your kindness in your kind words. Bye for now

TheAuthor profile image
TheAuthor in reply to geniebeanie

Good luck my friend

Annunnaki profile image
Annunnaki

Hi. I have the same thing and always associated it to fibro as there were no other explanation. I read pins and needles is associated with it. Unfortunately I never found a remedy.

For pain please ask your gp to refer you to a Rheumatologist. And if you already have one ask to be referred to the pain clinic. They are much better at managing pain, and don't have myth that ie opiates don't work at all. As it works for some. I wish you all the best. 💗

Blessings.

geniebeanie profile image
geniebeanie in reply to Annunnaki

Thanks for your very quick reply. I will do as you suggest Blessings back

Annunnaki profile image
Annunnaki in reply to geniebeanie

You're most welcome sweetie. I hope the different advices help. 💗

B61m profile image
B61m

Get in touch with a local support group and they will have all the information and advice u need mean while ask someone who loves u to gently massage ur legs when the muscles 'lock' I find high doses of magnesium citrate powder mixed inwarm water an drank through out the day helps also magnesium oil rubbed on your legs will help u also must get information on healing your gut which is usually badly affected by this condition u are not alone Their are millions of us affected by this dis -ease and there is loads u can do to help urself and b helped I've lived with this illness for33 years and have only been properly diagnosed this week after being in A/E what seems like millions of times an not been diagnosed so take heart honey u'll b. Ok (with a lot of support an the right meds and supplements ) God bless u on ur journey and seek out what u need U will find ur way love and gentle hugs🍀☀️🌻

B61m profile image
B61m in reply to B61m

Also stretch stretch s t r e t c h use stretchy rubber bands ur phisio will get them for u and when u have enough energy join a swimming group deep breathing to relax is great also and take time to b still and quite Love and gentle hugs Irish Coleen B 🍀☀️🌻

geniebeanie profile image
geniebeanie in reply to B61m

Hi,thanks for the advice means a lot

geniebeanie profile image
geniebeanie in reply to B61m

Thanks great advice from someone who knows. I will get onto things today God bless you

Al10 profile image
Al10

It's very vague and could be due to alsorts. Or just fibro. Have you tried cutting out sugar? And maybe caffeine too.

Was talking the other day and someone mentioned how their weird leg and body night restlessness and pins and needles were better since giving up sugar?

I'm not sure yet, though I think it helps a little. I keep falling off the wagon!

Are legs fatigued? Are you fatigued all over? Is the heart pumping efficiently? Are you out of breath? You GP has lots of options to check. He does need to rule treatable things out.

Have you damaged something? Your back? is the a nerve trapped? or tendons damaged? Is there weakness?

I like the idea of managing symptoms naturally where poss so the magnesium and following a good fibro supplements protocol might be the way. It can be expensive though. I'm a fan of B12 as it can help with nerve problems. And fatigue. You must do your research first though. Your GP can check your levels.

And do the exercise you can. A nice warm pool might do wonders, just don't over do or get cold. Keeping moving is very important for us. And keeping as fit as we can. Good luck and share your successes.

AnitaK profile image
AnitaK

Oh dear.I know how you feel .Must be like being tortured thats how I feel sometimes.Take pleasure from the small things if u can a sunny day, birdsong whatever.Sending good wishes

My legs are terrible too at min I use a massage cushion I got off Amazon on them to stop legs cramps you plug it into the mains it has roller balls and heat to massage muscles. You can use it on back shoulders feet legs I swear by it was only £25

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