Leg problems

[Happy43]

Does anyone have leg issues? I've had increasing symptoms since around September last year, started with electric shock feelings, slight swelling sensation and muscle twitches in calves. GP suggested calcium deficiency but this has been resolved and still having same symptoms. More recently whole legs feeling heavy, aching and feeling swollen like water retention and poor circulation, calves feel cold inside 😕. Also had episodes of numbness and tingling. Comes on during the day but always feels better by the morning after being in bed. Is this Raynaud's or something else? It's uncomfortable and annoying and keeps happening. Do I mention it to Rheumatologist next time? Any information/suggestions gratefully received 😊

[KayHimm]

Happy43 - Definitely mention the symptoms. Doesn’t sound like all of it could be Raynaud’s. I don’t have that feature, so maybe others have more insight. I did have the electric shock sensation running down one arm, was worried it was neuropathy progressing, but it turned out to be a compressed nerve in my neck.

You have a few things going on. Would you consider seeing your GP if the rheumatology appointment is far away?

K

[Happy43 in reply to KayHimm]

Hi K I have a local Rheumatologist appointment on 19th July so will mention these symptoms. Forgot to mention, I have the feeling of water running down my leg aswell sometimes. I have wondered about neuropathy before, can you ask for a referral at Rheumatology appointments?

[KayHimm in reply to Happy43]

Then definitely mention all symptoms to your rheumatologist. They will evaluate and make the appropriate referrals. He may be able to order tests right away. No need to worry. Write it all down. He will examine you and make a determination. I feel for you. This stuff can be scary.

Kx

[Happy43 in reply to KayHimm]

Will do. Thanks.

[Roarah]

Unless you do have visible edema and/or vasculitis I think a neurologist is better suited to address these symptoms. Can you seek a referral. If you do have actual edema mention that to your GP to check for heart health.

[Happy43 in reply to Roarah]

Hi Roarah no there is no visible edema, I also have a feeling of water running down my leg sometimes aswell. Do I ask Rheumatology for a referral? I have another appointment on 19th July. Or do I see a GP?

[Roarah in reply to Happy43]

The water feeling is another neurological symptom. Maybe, call both your GP and rheumatists office to see who can get you booked first. Xo

[Happy43 in reply to Roarah]

Thanks will do.

[Buckley123 in reply to Roarah]

What’s Edema I have this in my hips x

[Roarah in reply to Buckley123]

Edema is swelling. This water feeling can be from things like sciatica, nerve entrapment, spinal issues including ms or even sometimes anxiety but it usually falls under neurology. With edema leg issues can be circulatory. Xo

[Buckley123 in reply to Roarah]

Thanks 🙏 I have bone marrow edema picked up on my hips on mri xx

[Plumstead15]

I agree the neurology. I started with these symptoms. They rapidly progressed and got worse. Had nerve conduction tests which revealed peripheral neuropathy initially. Things snowballed. More tests and spine mri. Now I’ve been diagnosed with transverse myelitis caused by lupus. Just waiting for treatment regime. So keep a diary of his the symptoms progressed and ask to see a neurologist. Good luck.

[Happy43 in reply to Plumstead15]

Hi Plumstead15 and thanks for your reply. I have been keeping a diary of symptoms since December. I will ask for a referral to see a Neurologist. I hope you are treated soon and feel better 😊

[NeuronerdDoaty]

I had another horrible night last night. My hips and legs are such a mess. My hips hurt all the time and the large muscles in my legs are getting very weak. I don’t have any of the electrical sensations but I have a sensation that I’m being stuck deeply with a needle in one spot. It’s quite painful.

[Happy43 in reply to NeuronerdDoaty]

Hi Neuronerd sorry you are also having leg problems, it's so uncomfortable at times and annoying. I hope you feel better soon 😊

[NeuronerdDoaty in reply to Happy43]

I hope you do as well. Best of luck and care to you.

[Hidden]

Yes I have had these same neurological symptoms you describe for some years now.

It started with sensation of burning soles and wet crawling thighs and knees so I kept patting my trousers or leggings. For me it is small fibre neuropathy although I do also have mild oedema in my ankles and elsewhere but the vascular dr I’m under isn’t interested. He says it’s all small fibre neuropathy -SFN- related to my Sjögren’s. My neurologist confirms it is SFN for me.

It affects my hands and arms similarly and face too. It did present as stabbing, shooting and burning hands and feet for about 3 years but is now mostly tingly, cold and numb. This form of neuropathy doesn’t show up on nerve conduction tests. The gold standard test for SFN is punch biopsy. In the US people are sometimes treated to good effect with IViG but in UK this is too expensive and scarce a resource so the severe pain is usually treated with Pregabalin or Gabapentin.

I do also have Raynaud’s and erythromelalgia and they do overlap somewhat with the SFN. Also sometimes I get flat red spots where the pain is when I’m flaring so I guess there’s a small vessel vasculitis at work too.

[Happy43 in reply to Hidden]

Hi Twitchy yes I get the flat red hot spots on my shoulders and knees when the pain is flaring. I have also had nerve pain in my temple, ear and jaw area since December, GP said it sounds like Trigeminal Neuralgia and gave me Amitryptiline but it comes and goes so I haven't tried it yet. Sounds like I need to ask for a referral to Neurologist then 😟. How is the steroid injection going? 😊

[shaunalouise26 in reply to Hidden]

I have same symptoms had nerve conduction study come.back normal so consultant wrote "no neuropathy ". I know a biopsy is needed but he was really off with me even about doing the EMG so I didn't want to challenge him. I think they think I'm neurotic because I have anxiety but I'm definitely not. Its spreading up my leg now if I touch the back of my thigh I get tingling and static down my shins. 😥

[Hidden in reply to shaunalouise26]

Shame you are being treated in this way. It’s so easy for doctors to choose to overlook real biomedical conditions such as small fibre neuropathy - which can be just as destructive as large fibre if it progresses - in favour of functional diagnoses or pointing to history of anxiety.

Maybe your anxiety is caused by having invisible sensory symptoms that don’t have a name or are progressing unacknowledged? Having creepy, unexplained sensory symptoms is enough to make anyone anxious - it’s like being in a Hitchcock movie!

If we have autoimmune diseases then the likelihood of this kind of small fibre neuropathy is much higher but it is, unfortunately, harder to confirm and therefore often overlooked or passed off as Fibromyalgia or FND. X

[shaunalouise26 in reply to Hidden]

My anxiety is caused by dismissive doctors it's like a living nightmare. I dread hospital appointments. I'm having to live with this. They are quick to say what it is but not what it isn't. My toes are completely numb now. I also tested positive for a lot of scleroderma and polymyositis antibodies so my rhuematologist said there were too many antibodies so results must be wrong so would repeat but now refusing to sp I'm left in limbo with UCTD. I've had centromere B antibodies twice and I believe you only get them with scleroderma. I have orthostatic hypotension confirmed on tilt table after being told for years it was panic attacks yet still they won't listen. Diagnosed hemifacial spasm last year but no nerve compression on MRI so being offered botox! But not being told what is causing it. I feel like my body is in a constant electrical storm. X

[Happy43 in reply to shaunalouise26]

Hi shaunalouise26 I have also been struggling with anxiety for 18 months and feel wary of GP's and consultants and their opinions following bad experiences with their choices of words (see my first post). I dread appointments and even though I know I have symptoms, I don't really push for explanations or tests as I do often think they'll put it down to anxiety (this did happen at one Rheumatology appointment and I then went on to have a scan at a different clinic which confirmed early signs of sjogrens). I do feel I need to be more assertive but it's difficult. I also have been diagnosed with UCTD and I've been tested for 4 years and have a few positive antibodies but no full criteria for a more definite diagnosis. It's hard living in limbo and I understand your frustration. Best wishes 😊

[Hidden in reply to shaunalouise26]

I very much relate. I don’t suffer from anxiety inherently - just misery of being dismissed and not believed and feeling that I’m a hypochondriac wasting their time. I had an antibody show up for Scleroderma last year but the CTD dr said it was a false positive. They said this about Sjögren’s too until I had a 100% positive lip biopsy. I thought at last I’d be taken seriously but sadly they don’t take Sjögren’s very seriously where I live.

I’ve decided on a different approach now and ignore every weird symptom as far as I possibly can. I’m resolved not to go to GPs and simply attend each specialist appointment with polite but flat indifference for now because this seems to work better for me. I had a terrible winter with loads of problems and appointments and related anxiety. I still have very non neurological dental and skin problems which are being monitored, treated and operated on over the coming weeks and months so can’t avoid doctors entirely unfortunately.

But for the neurological issues I’ve decided that being made to feel as if I have heightened health awareness and being told I need CBT for chronic illness is a sign of health system failure rather than a sign that I’m losing the plot or that I’m imagining these horribly creepy invisible symptoms! 🤷🏼‍♀️🤗

[Jmiller623 in reply to Hidden]

I have been where you are and I know how soul crushing the experience is. Please know these symptoms will not be forever once things get controlled. I promise you. Regardless of what you do and don’t have, you have a CTD and need treatment. Your symptoms are consistent with small fiber neuropathy and I must say, I’ve seen more success with CBT than any pharmaceutical drug approved for neuropathy. It will not take the swelling away which will come and go but it will help with pain and stress. I’m so sorry you’re going through this. It is as much a mental feat as a physical one. Hang in there! There will be better times.

[Hidden in reply to Jmiller623]

I’m not sure if you’re replying to me or to Happy43? If me then I should say that, although I have found symptomatic treatment medications not to be much use either - I think more research needs to be done into modifying medications that slow down the SFN.

If insurance agree to pay then people I’ve come across via SFN/ Sjögren’s forums in US have had very effective relief for their small fibre neuropathy from IViG and Rituxumab. There’s no way I’ll ever be offered these for SFN everywhere so I’ve agreed to have CBT just to keep my neurologist happy.

It’s in the bowels of my hospital and I feel gloomy just being in the horribly lit, smelly hospital environment and will have to pay £3 for parking to attend each session. I honestly think I’d get more benefit from attending a good Pilates class but I can’t afford this just now.

Also there’s an 8 month to one year waiting list for neuropsychotherapy. I feel that walking my dogs on the beach (soft falls!) In fresh air and getting time in my studio are always going to help my wellbeing more than CBT. For me I’m okay at living with and ignoring this sensory rubbish as long as I know what it is and feel sure that’s all it is. I didn’t always feel this way but I’ve had it for a long time now and other health problems have superseded it.

[Hidden in reply to Hidden]

Ps Small fibre neuropathy is a biomedical condition secondary to autoimmune disease for many sufferers and isn’t caused by anxiety.

[Ebaymama]

Sorry you are not being taken seriously! I am treated for an anxiety disorder with Med & have done CBT. My right leg has electric jolts that make me feel like running in bed or causes it to jerk/shake violently. Diagnosed many years ago with RLS ( Restless Leg Syndrome).’ My toes are always cold even with high temperatures.

Hope this may help for part of your description. To Happier Days!!

[Happy43 in reply to Ebaymama]

Thank you Ebaymama 😊

[Buckley123]

Me I get all of the above I can’t help more then that because I can’t seem to figure out myself 🤦🏼‍♀️ but you are not alone xx

[Happy43 in reply to Buckley123]

Thanks Buckley it's all very strange, comes and goes 😊

[Buckley123 in reply to Happy43]

And mine including twitches mines alll over xx

[Happy43 in reply to Buckley123]

Me too 🤔 x

[Buckley123 in reply to Happy43]

I found magnesium stay helps a lot atm xx

[SRiley]

Your symptoms sound very similar to mine! My legs have been my main issue and I also have Raynauds. They initially said Myelitis but my last MRI was normal so they are a bit unsure as to why I still have these issues.

I’m going to try magnesium. Not sure what else to try...! I definitely think you should mention these symptoms at your next appointment and ask for referral to neurology