I've had a couple of good days due to no neuropathic pain, however the joint pain and stiffness is still there plus I'm starting to have problems climbing my own stairs. This is quite frightening and I'm trying not to worry but I really think I need some urgent tests. It's only 12 steps. Ok going down stairs apart from stiff knees.
I've found there is less of the sharp neuropathic pain if I walk on the inside of my left foot. It hurts, but not as much as if I let the foot fall outwards, however it's a real effort to turn my foot inwards and I'm sore when I've been walking but I can go so much further doing that. Not for the first time I'm wondering if there's something wrong with my feet.
Just a bit scared because this seems to be progressing and quickly. I'm starting to worry there is something really wrong. I sure wish I had a good GP.
Apparently my neurosurgeon has now left and he didn't refer me to another rheumatologist. It's a 10 week wait to see them anyway.
I'm freaked out by odd things I'm starting to struggle to do. Seems unpredictable too. I had a good walking weekend but haven't really been able to bend too well or handle stairsand when I get up in the night to use the loo there's a loss of power getting off the loo in my thighs/knees and surely I shouldn't have to turn my foot at an angle to walk even though it's so nice to be able to walk round a shopping centre as I did on Saturday.
Anyone got any ideas what's going on here and how I can get my GP to understand what is going on here?
Megan
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Megan75
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If the extra problems have come on suddenly then I suggest it is 'payback' for having a good weekend and doing too much.
If you have the facilities you could try an Epsom salts bath. This is a way of getting magnesium into your aching muscles and might help to ease some of the pain.
hi megan i have perifual neuropathy in both of my feet its agony to walk i get a burning sensation in my feet and electric shocks trying to walk is like walking on sharp broken glass .i saw a podriatist and was diagnosed i have many other health problems but i have a stairlift a godsend and a mobility schooter hoping to get an electric whelchair soon dont give up nag your doctor good luck .
I struggle to sit down so sadly none of those things would be good for me, unless they ever invent lying down versions😉
I have sciatica in my feet and it's not nice but bearable. I've had a big improvement over the last week in my sitting/walking issues similar to that which I experienced after a caudal epidural injection. I changed my anti-inflammatory and I think that's why my foot is able to be placed down on the inside now.
I'm going to see someone about acupuncture tomorrow so I'm hoping for a big reduction in my pain, fingers crossed.
I am sorry to hear about the extra level of pain that you are experiencing.
If it were me, I would write down the things that I wanted to tell my GP. That way I would not forget or wander off topic. I would keep it focused on the new symptoms and emphasise how worried I was. If I was concerned about the GP not listening then I would ask a friend or family member to come along for some moral support.
With regards to the Rheumotologist, there is usually a long wait after being referred. That would not stop me getting on the waiting list though. I would also find out who the consultant is and get in touch with the appointments office. If I was able to get to a last minute cancellation, I would tell them this.
It may be of use to have a referral to occupational therapy if you have not already done so. They are able to advise on household bits of kit that may help you.
I am fortunate to have a good osteopath who keeps me moving. You may wish to consider finding one if you have not tried one before.
I'm already under a rheumatologist but they are useless and wouldn't listen to my other joint issues. It's a 10 week wait for me to be referred to the rheumatologist at the same hospital as my neurosurgeon.
Yes, the occupational therapist is a good idea. I'm hoping to get an assessment by them through pain management as I've been referred to them and am seeing them on 16th May.
I'm trying acupuncture again in the meantime.
I'm just scared because I don't know what's wrong. I need the peace of a diagnosis I guess.
I have been diagnosed with DDD (L5/S1 and L2/L3, herniated discs, pressing on the nerve but not compressing it, mild stenosis at L2/L3) and hypermobile joints. I've had 2 MRIs confirming the DDD and the bulging discs. I've had a nerve conduction study which showed that my sciatic nerve is damaged/entrapped at hip level.
I'm already under the care of a rheumatologist and a neurosurgeon. The neurosurgeon wants me to see an orthopaedic surgeon and an alternative rheumatologist because the one I have is terrible and none of the neurosurgeons I have seen think the pain is coming from my back. The pain is both joint pain, neuropathic pain and muscular spasms. The pain types were confirmed by a pain management consultant last June.
On 7th May I have MRI scans of hip, sacrum, lumbar spine and pelvis.
I understand your list of diagnoses but why are you seeing a rheumatologist too?
Yes, definitely, you need the input from a neurologist and an orthopaedic surgeon with that list but where does the rheumatologist fit in? I know it seems like I'm/we're being nosey!!
It's the joint flare ups I also get and the tiredness. And the hypermobility syndrome.
It's an accident that I ended up seeing a rheumatologist actually. I asked the GP to refer me to a neurosurgeon back when the sciatica got worse in November 2014, but because of my long history of joint flare ups I ended up seeing a rheumatologist, except they only looked at my back! When they weren't that helpful I later saw a neurosurgeon.
For joint pain and stiffness check out your vitamin D levels and also vitamin B12 too. low or deficient vitamin B12 levels are connected to neuro pains and spinal problems.
Being deficient in vitamin D can cause walking problems too.
I was vitamin D deficient and it started to affect my walking. (Also adult rickets.)
Once I started to take a good safe dose of vitamin D3 all my stiffness of getting up out of chairs and bed went overnight, among other things it healed.
Many people stay indoors and do not get much sunshine on their skin, 85% of us here in UK are either low or Deficient in vitamin D.
Having a good level of vitamin D keeps many illnesses at bay.
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Lower back right hip pain difficulty walking sitting driving lying down sleeping.
Old foot pain leading to knee pain
Cauda Equina Symptoms 
I have a random one for you all.
Really painful stiff back 
