Hello. I started getting pins and needles in my hands nearly five years ago. It spread to my feet. It would come and go and then flare up sometimes for months at a time. I had nerve conduction tests, as my first rheumatologists didn't think I had arthritis and was sure I had carpal tunnel syndrome. I didn't, and the tests were normal.

Every time I saw a new doctor they would say "Sounds like carpal tunnel syndrome" and get me to bend my wrists to elicit symptoms, which of course did nothing because it wasn't carpal tunnel syndrome.

Because I had no continuity of care, I went through these motions about seven times. I could have screamed every time someone said "Bend your wrists like this, does it bring on your symptoms?". It never did. Because it wasn't carpal tunnel syndrome.

Nobody had any answers. I started to get really severe back pain and numbness in my back. My whole arm goes dead really easily. Once I stood up from a normal sitting position and fell right over because my whole leg had gone numb while sitting down without me even noticing.

Finally, earlier this year, my rheumatologist ordered an MRI of my whole spine. Like you, both my arms went dead just lying down for the MRI.

I finally got hold of the results and it showed bulging discs and disc degeneration at every section and one disc extrusion that is impinging on the spinal cord (at the spot where I get numbness in my back).

My GP referred me to the neurosurgeon and I waited and waited. I saw the rheumatologist in the meantime, who basically said it was a neurological problem and she couldn't really do anything but she could refer me to neurosurgery. I said my GP had already done that.

I finally saw the neurosurgeon, after six months of daily, agonising and debilitating back pain. He said there was nothing he could do for me, that operating on the extruded disc would likely paralyse me, and that any pain I had in my back was caused by arthritis and my rheumatologist should deal with it. He was not convinced that the bulging discs or disc extrusion were causing my symptoms.

I asked him what about the numbness and pins and needles? He said... wait for it... "Sounds like carpal tunnel syndrome. Try bending your wrists like this...".

🤯🤯🤯🤯🤯🤯🤯

So, I cannot really help you. But yes I live with pins and needles and no answers. It is maddening and I imagine in your case quite distressing. Hopefully the neurologist will have some answers for you. I asked my rheumatologist for some amitriptyline for the nerve pain, but I haven't actually taken it yet.

I do understand how scary it feels. I do not have spondylitis and my symptoms are caused by a fracture in the second cerebral vertebra that is now pressing on nerves and threatening the spinal canal. When I got my first tingling symptoms I turned to my good friend dr google to find out more.Found out a huge amount of info and knew I had to find a good neuro surgeon. Had a lot of images taken scanner and MRI and x-ray of the neck. The first surgeon wanted to operate right away and gave me a 15% risk of paralysis. Did not sound right to me so I turned to get a second opinion of a well known neuro surgeon that gave me a correct diagnosis. The fracture was an old trauma probably caused by falling off horse that had worsened by age and degeneration. Yes it needed an operation but it was not urgent and done with microsurgery it would have minimal risks. To get the best treatment is not always easy. I need to travel to Finland to make sure, don’t trust the French any more after horrendous diagnoses and scare😳😱I’m waiting for the surgery and during the mean time I’m wearing a neck support to hold neck stable. Good luck, you really need to find a good neurosurgeon and one that has a lot of experience and the newest methods.All neurological back problems do not need surgery. Actually most of them should be treated for 6months with noninvasive methods before surgery is an option. Good luck👍

I have cervical spondylosis & muscle spasms, directly related, have bothered me in the past, leading to pins & needles down my arms. I take pregabalin & amitriptyline which keep them in check unless I’m doing something different such as at the mo, I’m grouting a tiled floor so am having issues but I’m sure they'll subside a day or two after I’ve finished. In the meantime I’m wearing a collar in bed, a relic of the past when I had cervical spasm in the '90's, around 10 years before RD diagnosis.

It might be worth discussing your med options as surgery isn't an option, should it require that of course.

Neurological problems can be scary, especially if it's of unknown cause. As you're due to be seen by a Neurologist I'm sure they'll test to see where these symptoms stem from. I had med related neuralgia, carpal tunnel syndrome & peripheral neuropathy, confirmed by two sets of tests, one whilst on it & one once I’d stopped it. Thankfully gone now I no longer take the med. Flare ups can happen, usually self inflicted, but at least I’ve an idea what causes them.

Do keep us updated.

I have various issues with cervical spine - disc bulges, joint space narrowing, disc degeneration, erosions etc. And yes I have periods with constant tingling. However, for me it is largely controlled by physiotherapy (fingers’ crossed) and have just had three weeks of daily hydrotherapy/underwater massage/exercise that has put my spine into a good place. Do ask if you can have some non-intensive therapy.

I am glad your different treatments are helping

I will see what neurologist says it will be a long road as I’ve so many illnesses on top

I can’t have massage either as it can move any clots present they won’t do it with my clotting illness

I have a nightmare getting any treatments for any of my conditions as I have too many now sadly

Hi there, I can relate to your problems as I have cervical myelopathy , cord compression c4c5 which is fused and waiting for C 3 to be fused , what I would say is have a scan on your neck to be sure .

Just curious... Have you had any chemotherapy in the past? I have a friend who had chemo for endometrial cancer and has had pins and needles, neuropathy, pain, and problems ever since and now has to use a walker. Doctor says it's a side effect from the chemo that will not go away.

This is awful. So much to deal with. I don’t know the reason why you are having pins and needles, so cannot offer any suggestions.

I did pick up on your neck issue and that you are unable to have surgery. I have a client in London that practices something called NUCCA. She is the only person in the UK to do this and people fly in from all over Europe to see her. It’s a specialism of the discs in the neck. It’s non surgical. She’s a medical doc too so knows her stuff. I’m not going to lie, it’s not cheap and will involve her taking a number of xrays first to see if it’s something that may help you. She’s not a quack or woo hoo fairy!

I’ve put the link here so you can read through it and see if you feel it could help you. nucca.co.uk/

Ive read again and this treatment is chiropractic

It may be a different technique but it comes under the Umbrella of something chiropractors would do if they trained in this technique theres only so many ways a neck or spine can be manipulated

I am sure some feel happy to have this type of treatment but it’s not suitable for me as I have strokes already and have neck damage

Thanks for the suggestion I do appreciate it

Please don’t put off pursuing a diagnosis, however scared you are. I had exactly what you describe this time last year and developed myelopathy without even knowing what it was - everything I raised was attributed to my RA. I finally got diagnosed with a compressed spinal cord and told my life was ‘in grave danger’ and I was just weeks away from Tetraplegia. I had surgery in March. Yes, it was scary and painful but I am now feeling better than I have in the last decade. I dread to think what it would have been like to wake up one morning paralysed from the neck down.

Also important to know: the myelopathy symptoms you have had the longest are the slowest to resolve, if they do at all. I was given a 30-50% chance of recovery. So don’t leave this a moment longer. Go to A&E tonight!!! Good luck.

That is a dreadful place to be and I find it absolutely appalling that you’re being left in this situation. If it were at all possible to raise the c£250 fee to see the neurologist privately, I would urge you to do so. In my experience, no Consultant would leave you in this dangerous position and would probably fast track you onto their NHS waiting list.

I hear what you say about your medical history and all the contraindications but your situation could be made less life threatening if you at least wore a neck brace. I urge you to pursue something of that nature rather than believing nothing can be done to help you. Paralysis is a whole lot worse than making a nuisance of yourself until the NHS recognises your predicament.

Oh that’s good, only 15 more days to stay safe!

You may we’ll be right about ‘different rates’ of myelopathy. My understanding is that the rate of deterioration is governed by the amount of pressure in the spinal cord. I’m no expert!

Do let us know how you get on. I hope you have a good consultation.

Are you on the Health unlocked Hughes Sticky blood forum?

I also have a very severe case of APS. I also have degenerative disc disease of the cervical spine.

It’s not fusing, Thankfully-however.

What I’m wondering is this:

*Are you under the care of a neurologist? It’s not uncommon to have dysautonomia.

You need to be checked for CIPD, for demyelination of nerves. ( I have this.)

*Dr Hughes told me that you can have a fluctuating balance issue- This is not a true myelitis, The blood that supplies the tiny little capillaries to the nerves coming off of spine can ,” sludge.”

I am currently on Rituximab for very high RF . We are hoping it will modulate the immune system and reduce the amount/ frequency of DVT’s I’m having despite a high INR. ( we are running it very high because I’m clotting so aggressively.)

Please have a look at the Hughes sticky blood forum.

Thanks I've had thyroid checked

I am on D3 long term have been for ages I was so so low

So what's your situ with you spine / neck etc

Hi, I am posting this to show you are not alone. I have three heart problems, CKD stage 3 and COPD. Had two X Rays, a CT and PET SCAN to see if a shadow on lung was cancer or not, not conclusive and have to have another CT SCAN in January as shadow is now in the other lung also... This is just to show you are not alone with serious health problems.

To your current worry: I have

Osteoarthritis cervical spine

Cervical disc degeneration

Read more

16 Mar 2015

Osteoarthritis cervical spine.

The latter two can cause problems, such as tingling, numbness and referred pain from arms to hands and worse in skull bones.

If you are likely to bleed (I am I take blood thinners) it is not wise to take Asprin, Ibuprofen or other NSAIDS,,

I take Dihydrocodeine along with Paracetamol for the pain AND - Gabapentin an Anti Convulsant for the nerve pain and tingling and numbness.

The cause on pins and needles maybe not be curable but can be controlled .

I do not know your circumstances and I am not a doctor, I am just pointing to my in some ways similar conditions to yourself.

Anyway good luck I thought I would post this to show with multiple conditions you are not alone... Do not consult Dr Google. he is a scaremonger. Best of luck hope you get relief,

Well I also have the pins and needles on both hand and occasionally go down to my legs. My neurologist said the same to me ..it is carpal syndrome but then my rheumy said that it was actually being caused by the inflammation in my hands and the neurologist dis say that I had nerve damage on both hands. I truly hope that the doctors find real solutions and a medical treatment that best suits you. May the good Lord in heaven have mercy on you.🌹

I’m sorry to hear this . Like wishbone I also live with the pins and needles in my feet constantly for past 28 years . I also have in my hands again I’ve been tested for carpol tunnel funny enough back there again for another conductivity test which last time was a no . I have degenerative discs lumbar spine that are inoperable and I was told I would always have this symptom as it’s nerve compression . I don’t have it everyday but add it to the bilateral sciatica I have it’s a total annoyance . You do get used to get and they can prescribe medication such as gabapentin or lyrica to help with it . Wishing you well 🌷

No but I only had a head MRI am waiting to see neurolgist on 17 Dec and I am sure he will send me for an MRI of neck and spine

The MRI I had 3 weeks ago was head only not neck on that one that was to see if I've had any more clots in brain with my clotting condition

I had contrast with CT but that was whole body looking for cancers