TCA, PMR, Fibro ... Paresthesia: NUMB: You were all... - PMRGCAuk

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TCA, PMR, Fibro ... Paresthesia: NUMB

Dream21
Dream21

You were all so kind to give me great information on the last post. Thank you.

Does anyone have numbness and tingling? Before had it at various places on my body. But this last time, most of my body felt numb/tingly. Can anyone help explain what is happening? Also, is it something to further investigate or mostly just a result of these diseases. Fear runs amok when I do not understand what is going on in my body. All of a sudden, you have this body that is doing so many strange things. Yikes.

55 Replies
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Numbness n tingling here too. Worse in the lower extremities and back side. Hands have some but not as bad. I’ve had it since January but haven’t had any explanation from doctors. I don’t think they know! I’m really just hoping it will finally resolve itself. It seem to be worse at night, interrupting sleep a lot! There are other peopl on this site that have mentioned it also. This past winter I put the heating pad on feet n ankles , that helped a little. Wish I had an answer for you , just wanted let you know your not alone with these crazy symptoms. maryanne

Dream21
Dream21
in reply to MaryA_

Thank you for replying. My doctor said he did not know. At least it is comforting when others have same symptoms. It seems like I have this new mysterious body with these crazy, scary symptoms. I will just keep going and hope it will pass. I am smiling as I repeat, “I will get better”. The disease cannot still our hope. Hope all is going well for you. Thanks again.

I have PMR/GCA and have neuropathy in both of my feet and left arm. I have asked the doctor about it as well and she just shrugged it off. I assume it is part of the illness, but not sure. I was diagnosed in May, so I am new.

Dream21
Dream21
in reply to kay7954

That is the same reaction I received. Are they bored about hearing about it? Seems others have felt the same thing. You say you are new...Welcome to a great group of people! I was thrilled when I found this group several months ago. Thinking of you on your journey.

karools16
karools16
in reply to kay7954

Hello I am trying to catch up with the forum posts, hence the delay in replying. I have had GCA almost 13 years now. I am glad my dr didn't shrug off the neuropathy in my feet. I don't know when/how it started, but I have an appt later this month, with the vascular surgeon. I was in my dr's room when he dictated the letter to the surgeon, and an appt followed fairly soon after. Maybe because the surgeon knows me and has operated on me. I would be inclined to either push your dr or get another opinion. All the best.

Dream21
Dream21
in reply to karools16

Thank you for your reply. It might be the beginning of carpal tunnel in my wrist. That showed slower nerve conduction. It seems many have this.

Hi

I had numbness tingling last year mostly one side of my body

Magnesium supplement started and all went .

I ran out about 4 weeks ago and never got around to purchasing more and it came back more or less straight away .

I actually made the effort to get some more yesterday

I also use Magnesium salts in the bath

Dream21
Dream21
in reply to Rose54

How interesting about the Magnesium. What strength do you take? I never heard of a magnesium bath. What is that? Thank you for your reply.

angiek
angiek
in reply to Dream21

Apparently Magnesium is absorbed very well through the skin, so can ease aches and pains, whatever the cause, by soaking in a warm bath with a cupful of Magnesium flakes (think mag chloride is best- but some people use Epsom Salts- mag sulphate- which is cheaper). Can also mix with distilled water and use as a spray on painful parts of body...tho I personally have never noticed any benefit from doing this. It can leave your skin a little itchy. I buy Westlabs Magnesium Chloride. (UK, from Amazon or direct)

Rose54
Rose54
in reply to Dream21

Magnesium supplements are 250mg

Epsom Salts or Magnesium salts you can but from Supermarkets . ,Chemist and on line .

Hidden
Hidden

Hi Dream21, YES! I have been plagued by numbness, tingling and pain in feet and hands for several months now... it started out as a slight tingling sensation in my feet, but has now turned into a constant heavy numb, pins & needles, tingling, aching, sometimes quite painful sensation; worse in my feet and legs, but in my hands as well. I have had an EMG which was "normal" (meaning only that the neuropathy is not caused by damage to nerve or nerve covering), but they are not sure of cause. Both GP and Rheumy have said it is not typically associated with taking Pred and/or GCA/PMR and are stumped. It is to the point now where I trip a lot and have actually fallen, so there is concern. I have an appointment with a Neurologist on the 21st of August, will let you know what s/he says. It is now more bothersome to me than my GCA/PMR!!!! I hope your's subsides soon and does not become any worse.

PS - I take a magnesium supplement too, but that has not altered the sensation at all, for me. : (

Dream21
Dream21
in reply to Hidden

I am so sorry to hear you are tripping from this. I hope you get good results soon. You have similar symptoms to me. It is funny the doctors seem so surprised, when others have experienced this, too. The crazy symptoms seem to change and ebb and flow. I keep repeating, “I will get well”. That is our hope. Sorry you are dealing with this, too.

Hidden
Hidden
in reply to Dream21

Yes, it makes no sense that so many people (with PMR and /or GCA) have said they experience this, but doctor's say it's not related. (?) I hope your's does not progress and stays only an annoying tingling feeling. Good luck.

karools16
karools16
in reply to Hidden

I will be interested in the outcome of your appt, MAMICI1. MY APPT IS WITH THE VASCULAR SURGEON ON 22 August. Neuropathy in both feet.I also want him to look at the discolouration in my feet.He knows me well. All the best with your appt.

I had bad tingling parasthesia at higher doses of pred. Has got better but not gone entirely at lower doses. Rheumy just noted it but offered no explanation. Tried gabapentin which did help but had other unwanted effects. Cold wind on the head brings it on!

Dream21
Dream21
in reply to Cally55

I am sorry you have this, too. The doctors do not seem concerned, but have no explanation. Oh well, I guess I am learning to roll with the punches. I wish you a great week and thanks for your reply.

I think it must be a side effect of actemra. I have developed the same symptom--I wake up at night with "pins and needles" on whichever side I was sleeping on I didn't have this before taking Actemra.

Dream21
Dream21
in reply to Gaijin

I had it with prednisone, but mild and localized. Now on Actemra, I am have it all over my body. Worse at night when my body is fatigued. So much doctors can still not explain about this condition. Wishing you a great week! Thank you for the support.

PMRpro
PMRproAmbassador
in reply to Dream21

On the Mayo clinic site burning, numbness, tingling or painful sensations are listed as a rare side effects of Actemra. Ones that should be mentioned to your doctor if bothersome. Fat lot of use that is when the doctor isn't aware in the first place...

And of course - when it occurs it SHOULD be reported using the yellow card scheme in the UK and the FDA reporting scheme in the US. If they are not reported - they never find out the true incidence of side effects which can only be established once a drug is in widespread use all over the world, not jsut in clnical trials.

I have tingling numbness in both feet & facial/head tingles. Many strange fleeting sensations. On 17.5 pred. at the moment.

That is how mine progressed. It started on the temple area and face, then hands, then feet, and now it can happen almost anywhere. I am sorry you have these feelings, too. It is a strange journey, but wonderful to have the great support of others. Thank you for your support!

I don’t have PMR/GCA. Am being treated for Wegeners (GPA)— though, so many of my symptoms seem to overlap with PMR/GCA. I too get numb-tingling feeling in my hands and feet. It is always worse at night. Sometimes the lower leg/feet numb-tingling keeps me awake. Also, had months of transient feelings of “goose bumps,” that would randomly appear on parts of my body. It was bizarre. It started on one side of my lower back, lasting only several seconds, then would move to others spots— even my scalp! I told my GP, Rheumys (2), neurologist, and any other doctor I saw, with no explanation given in response.

PMRpro
PMRproAmbassador
in reply to Canygirl61

How strange - I seem to remember something like that right at the start but I don't think it was as bad as you describe.

Dream21
Dream21
in reply to PMRpro

Thank you for replying. I am glad to hear you do not have this. It seems quite a few do. It is a mystifying disease. Have a blessed week.

Marymon
Marymon
in reply to Canygirl61

Get the goose bumps sometimes on hips, thighs, only at night.

Weird, doesn’t bother me so ignoring it, along with the other transient irritations.

Just hope that’s all it is.

I have numbness in left hand and arm

Would be good to know what it is!

Dream21
Dream21
in reply to sassyscript

I agree. It seems like a lot of us experience this. 😊

Hidden
Hidden

Hi Dream21

I’ve had tingling in my feet since the beginning of PMR & l also had it in my neck & face until l started the steroids, it was awful, it drove me mad!

My feet have been made worse by the peripheral neuropathy following Chemo so that kind of complicated it a bit.

Mrs N 💅🏼

Pepperdoggie
Pepperdoggie
in reply to Hidden

Yes MrsN reckon me too with the chemo. Plus pred. induced diabetes from borderline.

So sorry to hear. Another chemo warrior princess. It is so humbling to know others deal with more. I am sending you good thoughts.

Dream21
Dream21
in reply to Hidden

I am so sorry to hear you had chemo. You are a warrior princess! It is surprising to me that so many people feel this way. I have these unusual symptoms, too. Doctors still do not understand everything about this disease. Wishing you a good week!

Hidden
Hidden
in reply to Dream21

Thank You for your good thoughts & l rather like Warrior Princess 👸🏻 l shall be feeling rather Grand today!

Hope you are doing well?

Mrs Nails 💅🏼

Warrior Princess 👸🏻

Pepperdoggie
Pepperdoggie
in reply to Hidden

Not sure i am over whelmed with that description for myself!!!! But hell I'll take any good thoughts coming my way! Thank you Dream21 hope you soon have some relief from the symptoms.

Hidden
Hidden
in reply to Pepperdoggie

You of course can be the Warrior King 🤴😉

Pepperdoggie
Pepperdoggie
in reply to Hidden

Love the fantasy! Every time my head rises out the trench!!! There seems to be a lot of s--- heading my way! Great song by the way "My way". Hope you had a good weekend. ATB

Yes I have numbness in one foot and Consultant just said a reaction to the drugs and something I will have to live with. I did also go to a. Ostiopath who suggested putting my foot in fairly hot water in a bucket for a short time and then immediately putting a cold freezer pack on my foot for a short time. That does help. Was interesting buying the bucket- didn't want one too big so was trying them for size. Other folk must have thought I'd list the plot!! And yes....!!

Pepperdoggie
Pepperdoggie
in reply to Jackoh

Loved to have been in that shop jackoh! Did you take your shoe off & sit down! Or was it a stand up jobbie!

Jackoh
Jackoh
in reply to Pepperdoggie

Stand up jobbie!

PMRpro
PMRproAmbassador
in reply to Jackoh

I feel compelled to mention that Scots might have a double take at these comments.


Jackoh
Jackoh
in reply to PMRpro

Well you never know do you !! Thanks/ or not! for educating me !!!

Pepperdoggie
Pepperdoggie
in reply to PMRpro

AH! Don't make em like him now! Funny guy he was! I'm concerned about your compulsion though PMRpro! Have you seen a doctor about this!! ATB

PMRpro
PMRproAmbassador
in reply to Pepperdoggie

I saw him live in Dundee and he told the jobbie weecha story then - much funnier than on the audio there! I had quite a fun half hour listening to Youtube stuff while looking for it!

Pepperdoggie
Pepperdoggie
in reply to Jackoh

Very brave. It's a tough world out there! Thank God one didn't get stuck! It's the embarrassment!

My toes would feel tingly but not pain really on lower doses it has improved

Currently at 5

Dear Dream21,

In answer, to your actual question, I don't know. As regards 'Numbness' generally, unless there is an obvious cause, I would get it 'Checked Out', If I were you. It could, I only said COULD, be a sign of a worsening 'Neurological Condition'. In any event it's not Normal.

AndrewT

Me too, like so many others are saying. My neuropathy started mildly, a little over 2 years ago, just a couple months before my PMR. It has slowly progressed over these 2 years so that it is now a much worse issue than my PMR symptoms (I am on prednisone). Started a mild tingling in fingers and toes, progressed to most of my body. Worst in feet and on left side. My feet have now been diagnosed with tarsal tunnel syndrome, and I’ve had to curtail my daily hikes. Hands and feet sometimes get numb, and my right foot has 2 permanently numb toes. Worse at night, it keeps me up, and it’s becoming painful especially legs and feet. I’ve had MRIs which have shown issues with disks in my neck and also strange, transient, large patches of inflammation on my lumbar spine. Had blood tests...no diabetes or B12 deficiency. Last week I had a nerve conduction study which showed I have significant neuropathy in legs and arms, but no cause determined. Well I already knew that, lol. Most recently I’ve been having buzzing sensations on the left side of my face...and an odd cold sensation inside mouth on left side. Recently tried upping my Prednisone to 9 mg from 4.5 mg...my PMR symptoms and frequent migraines are improved, but not the neuropathy.

Sorry to hear you all have this too, and if anyone ever gets any answers or help, please post about it!

Dream21
Dream21
in reply to Ciar

Thank you for replying. I am so sorry to hear about your difficulties. Your symptoms sound like mine. The neurologist said I had 3 out of 4 hand nerves with slower conduction. He said some patients get it in legs. I already had tingling in feet and legs, but conduction normal. Just like you, it is traveling all over my body. I hope your symptoms get better! It is comforting to know others get this, too. Thank you for sharing with me!

You made me laugh about trying on buckets. I will try what you do. The symptoms can be so varied. Good week to you!

That sounds very similar to mine. It is interesting that you experience most at night, too. I will have it during the day, but usually my hands or thighs. Whatever it is, the doctors do not seem very concerned. Thank you for your reply. Wishing you a good week!

Some more info for the melting pot on this one. I have had tingling / burning feet and legs for many years that got worse and worse. Always kept me awake. At the same time, my lips used to tingle and burn and I'd get strange ulcer type things on the inside of my mouth and random large blood spots. I always felt it was related to what I'd eaten but just couldn't get to the bottom of it myself. I mentioned it to various GP's over the years and had a lot of pitying looks but not a lot of action.Once I started prednisolone (GCA diagnosis 2012) it got slightly better but then worse again as I reduced the dosage. In August last year I was eventually diagnosed with orafacial granulomatosis (oral crohns disaease) and started on a strict diet excluding all cinnammon and benzoates (natural and artificial) from my food and life. There was some improvement but the burning and tingling would randomly return and I often couldn't put my finger on what had triggered it. After reading about baking powder vs inflammation on the forum a few weeks ago I decided to try it. I'm delighted with the excellent results so far. I've only had one big episode of feet and lip problems and that was my own fault - I couldn't resist the sauce on my mackerel when I was eating out. My feet and legs are much more comfortable through the night although not completely free of the burning and tingling. Now, if I could only direct the baking powder to work its magic with the GCA and PMR I'd be a very happy bunny. Sadly I'm back on 15mgs of pred after 9 months in club zero. Here we go again.

Excellent forum by the way. I have learnt so much from you all, thank you.

Ciar
Ciar
in reply to joyce69

Thanks for posting this. I’ve had mouth sores and blood blisters for years before neuropathy an PMR. Will check out the baking powder thing.

HeronNS
HeronNS
in reply to Ciar

...and joyce69 - It's not baking powder, it's baking soda. Baking powder contains other ingredients, baking soda is calcium bicarbonate.

joyce69
joyce69
in reply to HeronNS

Ive just checked the box and of course you’re right, it is pure baking soda. Thanks for pointing it out.

I buy Arm and Hammer pure baking powder with nothing else added. It seems to be doing fine. Do you think I should go for baking soda instead?

I also have numbness and stiffness in my fingers legs and feet,l had these symptoms before l was diagnosed with PMR.l saw a hospital consultant and had an MRI scan on the back of my neck,the consultant thought l might have degeneration of the spine but the scan was oK. I am still no wiser . It has been getting worse lately,especially in my feet and toes,l will mention it again to my GP but l do not think much can be done about it.

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