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Male, 30, in Uk, newly diagnosed FM, numb leg help!!
8 Replies
cloverleaf145 - March 16

Well hi folks. This is my first post to this site as i got diagnosed 2 weeks ago after suffering for years with the worst neck and shoulder pain i have ever experienced. I've had all three main FM causing triggers happen to me over a period of time which seems to have led to this.

I had HSP virus as a teenager. I had numerous neck and shoulder traumas through mountain biking, and suffered bullying for the majority of my school life.

I started out with pins and needles in hands and feet after training on the bike and in the pool. Being a strong young thing i ignored it. But it got worse each time. it continued with bouts of the neck pain and the shoulder muscle would be taught and hot and burn where nothing would touch it with regards to pain control. I would go in cycles of remition and flare ups.

Now i am in a position where i can keep pain to a minimum as long as i do very little. and wait for the next flare up. Very frustating. I suffer a lot with the fibro fog. The more i work the worse it gets. I am at uni at present and very scared about going back to work.

The good news is we have counsellors at uni, and we have a health & nutrition dept. which i am seeing on friday this week.

What i am wondering about is my left leg. I keep getting a numb patch the area the size of an open hand on my thigh just above the knee cap on the outside. More worryingly is that after several flare ups it has left me with permanent tenderness in the same area and the muscle fibre feels a whole lot different than the other one. kinda lumpy? If i press on it i get pain down into the knee too. Incidentally its the same knee that is hyper mobile.

Yes i have been blessed with hyper mobiltiy syndrome too, together with dyslexia and dyspraxia. I went back to University 18 months ago and have been diagnosed with all of this since then.

The web site is really useful. this is where i found out about the fibro fog. I always knew there was something wrong up top. but was always too scared to tell people in case i got locked up.
Now i know about it, i can deal with it. well sort of. If go away on a trip it will trigger a flare up coz i get tired easily.

Well thats my story, thanks for support in advance. All comments hints and tips greatfully recieved.

cloverleaf145

 

ptalana - March 16

Hi cloverleaf145 and welcome. About a quarter of Fms sufferers suffer with paresthesia, numbness. It normally effects our legs, arms, hands, feet, and at times our face. It is normally followed by pins and needles, tingling. One theory is that this is caused by muscle spasms pressing on nerves. I get these spasms in my back, while I don't get the numbness I do get the lumps. The numbness I do experience in my legs, arms, and hands though and it drives me nuts!
You should mention this numbness with your doctor to rule out other conditions that can cause numbness such as diabetes, hypoglycemia,and ms.
Once again welcome to our fibro family :)
Patty

 

feelinghopeless - March 29

Hey Cloverleaf145! I don't have a lot to offer as of yet, because I am newly diagnosed as well. I am just so thankful that there is a place where we can go to talk to others like us! Up until recently, I truly believed that I needed to be in a straight jacket and a padded room because no one I knew ever had the issues I had and no one really believed it either!

Nicole

 

Sonja44 - April 1

Welcome cloverleaf145. I had a severe flare in my forearms 2 years ago that hasn't totally gone away. At least they are functional now...I couldn't even pick up a glass of water or turn a door knob without horrible pain.

I now have spasms...in fact, the other day while re-filling my tea at the Pita Pit for lunch...I had a spasm in the arm carrying the tea...yep, tea went everywhere.

ptalana is right and you should rule out other conditions. Unfortunately, when you have an Auto-Immune disease (like FM) you are more prone to other Auto-Immune diseases.

Good luck and keep us updated on how you are doing.

 

axxie - April 2

Welcome cloverleaf, after reading your post, I can safely say stop doing the bike, some of your numbness will go away. Men and bike, no matter which way they sit, can have problems with the pins and needles. The problem is the seating arrangement pressed on your lower back couple that with road bumps or not, and it sits on your lower level back thus this is why you would get numb feeling. I would suggest you stop doing the back and go into swimming if not that yoga would help. A little excercise you can do at home is, lay face down and do reverse push up, meaning your body stays on the groung and arc your back while doing your push up, do 5 and repeat 3 times to start (that is if you can) don't forget to inhale deeply. This should ease your numbness in your back and neck. The spine will alongate for time you do your excersize this should help you.
Also sitting on excersize ball while rotating will also help you.
I would go see a physiotherapist they will be able to help you with other excersize that you can do that will help you, relieve some of the tingling and numbness.

 

cloverleaf145 - April 22

Well two months on from initial diagnosis the wonderful NHS of Great Britain has discharged me. GP offered me amitriptilene. Still thinking about this one. I'm a bit whary of psycho active drugs. Started Hydro therapy last week and immediatley had flair up. Has taken me a week to get over it. Thats quite short recovery for me though. Have persisted with hydro therapy and seems to be ok and work well now i'm recovering. However during flare up i kept waking up in a sweat with numb arms and shoulders and hands both sides. so much i couldn't move until they came back to life through insanly painful pins and needles. still happening actually.

I got tested for MS in the first place MRI scans the lot and nothing showed up. again diabetes has been ruled out. All bloods done in the last couple of months. Everything has been ruled out so i guess FM it is.

p.s. I swear that every time I have flare up the pins and needles spread and get worse.
I'm a bit stuck really.
Last resort is my Sister has a contact in the NHS that specialises in Adult Disparaxia and FM.
Wish me luck.

 

Kiwigirl - April 22

HI there
If you go to the website ukfibromyalgia dot com and register with the forums. I am sure the people there will be able to give some good advice on who to see.
good luck

 

englishrose - May 9

Hi Cloverleaf145 just looking through the older posts and came across yours..I'm from the uk too and was diagnosed with fibro almost two years ago..Have to say the doctors havent been much help in my experience i'm sad to say ..Was offered the same pills as you and tried them hoping they might help but i had an adverse effect to them so no longer take them ..I also tried hydro and have had two sets of sessions and i did find them helpful while i was doing them but the results were very short lived and i suffered just the way you say you do from the effort of doing the actual session.. All the symptoms you suffer i have too the pins and needles is a very odd one to deal with but so are most of the fibro symptoms to be honest ..I wish you luck in seeking ease for you problems ..Take care hugs englishrose

 

fibro78957 - May 23

Hello! I have been suffering the symptoms of FM for over 14 years but was only diagnosed 8 months ago. I have a lot of parathesias in my hands, feet, mouth and face. I also had numbness in a section of my right upper arm. My rheumy started my on a barage of medications for sleep, pain, etc. After being on cymbalta for 3-4 months, i had fewer issues with the numbness and tingling. I too have ongoing issues with fibrofog. It is horrible. I don't know which is worse - pain or fibrofog. My heurologist referred me to a neuropsychologists for neuropsych testing which proved i had major issues with short term memory, attention span, cognition, etc. I am an operations manager at a very fast paced pedi multi-specialty practice. I think it takes me twice as long to do things as it used to. I can't think names of things. When I speak, the wong words come out. This is a lot like dyslexia. My team of doctors say I need to reduce my stress inorder improve syptoms.

 

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