Any ideas?

[logan97]

Hi new to this group!

I have recenently been reading up on Fibromyalgia and a lot of the symptoms resonated with things that have been going on with my over the past 2 and a half years.

I was wondering if this sounds like Fibromyalgia and I should talk to GP about it.

I am 20 year old who’s health is relatively good despite the back pain. History of sciatica and breast cancer in the family but nothing with as early onset as mine (despite 2nd cousin but they don’t really count that.)

The pain in my back started as a sharp pain in my sciatic/ lumbar region randomly whilst I was at school when I was 18. I found it difficult to walk and the doctor gave me co-codamol and sent me for tests. All the tests I have had since the first appointment have come back as normal, so am now waiting for my Neurology appointment in NOVEMBER(!!!!!) to meet with a Neuropsychologist for 6 weeks of CBT as they believe it is a functional disorder.

In November 2016 I spent 10 days in hospital because I lost the use of my legs, it took around 3 months for me to be able to walk unaided again and my legs are still weaker than they should be.

2 and a half years later my daily symptoms are;

-lower back pain

- regular muscle knots in upper back which cause a lot of pain

-weakness in both legs

-visible muscle loss in my thighs

-extreme shooting pain in my right hip

-shooting pain that extends down both my legs, more severe in my right

-constant temperature difference between my legs and feet (feet are colder)

-regular pins and needles in both feet

- reduced motion in my ankles, often sore and swollen after being on my feet for longer than an hour at a time

I have also had shingles twice in 2 months at the ripe old age of 20!

(My pain is constant and I feel these symptoms on a daily basis on a varying level of severity. The only symptoms that don’t occur every day are the pins and needles and coldness in my feet but are usually present 4/5 days a week)

I have been to rheumatologists and physio, had 2 MRIs of my spine that have come back normal, a nerve test that has come back normal and a MRI of my brain that has come back normal.

Whenever I have a blood test it always comes back with inflammatory markers but I I have tried taking a variety of anti-imflammatory tablets and vitamin D tablets which never reduce my pain.

I am at complete loss of what to do next. Doctors constantly comment on how weak my legs or, or how unusual my pain is but never seem to want to do anything about it. Instead I take 12-hour prolonged-released Tramadol and countless co-codamol tablets a day in order to get by.

Please help me 😞

[Sewnsew]

I’m no expert but thought I’d just mention the things that are in my mind when reading your post.

Have you had your B12 levels tested? Even if you’ve been told it’s “normal” I would suggest you post the result on the B12/pernicious anaemia site on here/Healthunlocked.

Have you been tested for MS?

Having mentioned the above I am not diagnosing you at all but please take the B12 deficiency seriously, it can often be missed or dismissed but it can be fatal if not picked up.

Sorry to hear you’re having such problems at such a young age. I hope you get to the bottom of it. It could in the end be Fibromyalgia but everything else needs to be ruled out first.

😉

[logan97 in reply to Sewnsew]

Thank you so

Much for your reply!

I’ve had various blood tests done so I’m not enteriely sure. I’ve had so many doctors look at me that I’m not even sure what they’re testing for anymore so can’t say either of these have be ruled out! But I will have a little look at these. Don’t want to diagnose myself but I just want to be able to go to the doctors and push for some results if you get what I mean so thank you for your reply! X

[Runskye91]

Hi logan97

I am also new to group so welcome 😊

I have fibromyalgia and hypo mobility, I get a lot of your symptoms and I think when I get pins and needles and cold I think it’s my circulation and I get shooting pain in left hip all the time and down my left leg and lower back pain to most of what you have I have so I feel you i get feeling in legs like they just gunna give way on me. I have had lot of Doctors and text and physiotherapist and nothing really helps and because they have ruled out other stuff they sent me to a specialist at hospital and I was them diagnosed with fibromyalgia. Reading the other reply their I did have B12 def and had to be on injections for about a year but now levels are back to normal if not to high lol but my iron still but low so on iron tablets so maybe you sould ask for B12 and iron to be checked and also vitamins d because that can cause some symptoms you getting. I guess I would suggest you going to see you Doctors ask them to go through all bloods with you and ask if they can check what not been check and just say you want to no what’s going on with yourself you have a right to be properly diagnosed. Sorry for big reply hope it helps in some way xx

[logan97 in reply to Runskye91]

Thank you so much! I have an appointment today so going to ask what has and hasn’t be ruled out and ask about Fibromyalgia whether she thinks it could be a possibility! I don’t even want it to be fixed anymore I just want someone to tell me what I have!

Thank you x

[Runskye91 in reply to logan97]

No problem x and that’s it just not knowing is hard Work least if you knew what you dealing with you have bit more peace and get then move forward good luck let me no how it goes ye xx

[Hidden]

All sounds very familiar hun- when you see Nuero doc ask him/her about hydrotherapy,my consultants put me forward and ive been doing weekly sessions for 7 years now, it does keep my legs mobile, also ask about having a steroid injection in your bum called Kenalog- to initially settle all you pain and then ask if they can instruct your gp to give you same every 6 months for a while, you can still take your normal meds but you might find you can ween them down when the steroid is active.. good luck hope you get somewhere with the consultants.

[ruthmel1]

Fibro is usually described as whole body pain. Yours is all in your back and legs. I'm obviously no expert but it sounds more Neurological than anything else. I'm surprised your tests appear normal. Have they investigated MS? HAve you had a CT scan?