Hello it's me again. One of the worst things about GCA is the vast number of add ons sent to annoy. Along with glaucoma, diabetes and of course fatigue is neuropthy. Two years ago the acute tingling in my head was diagnosed as that complaint due to damaged nerves. It is difficult to treat and often tranquillisers are offered. Now since the lockdown the condition has got worst and is now intense pins and needles all over my body. I would like to know if anyone else has this as 14% of GCA sufferers are thought to be affected. If so have you found anything which helps. It is particularly bad at night.
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Cobnut
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Hi cobnut, I am PMR but diabetes and damaged nerves and neuropathy head to toe. I am currently on my 4th month of gabapentin, which most of the time, stops that horrible feeling of sparking electricity carried by spiders under the skin. I am still in the process of increasing the dose so I am not saying it's 100% but it is 60% better. I don't often have those nights when I am trying any position or touch that eases it and end up.in tears trying to get a position that stops it (nothing does for more than a few mins then it kick off again). I don't know if that's familiar at all. If so my sympathy. 🌻
Thanks a lot for your reply. Sometimes you wonder what else can be added to your list don't you. I think my GP may have mentioned gabapentin and I assume I will have to arrange a telephone chat with one to see about getting a prescription. As i currently take sixteen pills a day I often baulk at adding another but neuropthy is beginning to get to me now. I hope you continue to feel better and thank you.
Hi cobnut, I take about 10 meds and a handful of pills 4 times a day plus a couple of injections so I really do understand that sheer disappointed feeling of not another! But now it's starting to help (though must confess it's not helping me as much today....I am stiffening up each day stuck in the house ..no matter how many times I stretch!). What was I saying 🥴 yes, now I can feel it's doing more to help as dose increased and I sleep better in general it's worth it. And so far i can't say there are specific side effects. I suffered for years as Dr just thought I was drug seeking because I was in constant pain. It was the physio, after an MRI showed damage, that recommended gaba and the Dr practically pushed the drug down my throat! They listen when I say I am.in pain now. 🤔 Let me know if you get sorted. 🌻💜
I wonder if we are more acutely aware of these symptoms because there are fewer distractions? I remember a fizzing sensation from the early days of PMR. I guess that will be back with my GCA dose. It’s hard to distract yourself in bed but I have been listening to the sounds of thunder and lightning and battering rain that has sent me to sleep two nights in a row. There are plenty of gentler options on YouTube.
The Alexa gives me sleep noises but I like a routine thing having had insomnia most of my adult life. For several years I could only get to sleep "watching" Apollo13. It was the days of video so a while back. I wore the tape out. Realised the soundtrack was James Horner as composer. Now I can watch a film and know if he did the music. Sadly dead now I think.
I went to sleep to the sound of rowing gently down a stream, at night. The oar strokes had a hypnotic effect. You need to watch out for pesky free trials that turn into subscriptions like A. Prime inadvertently.
Hi puffyface - please can you eloberate how amitrip assists with neurpathies? I would be interested to know if any research has been done around this??
I once took nortrip (from same family of meds) for migraine prevention when perimenopausal & certainly noticeably benefical.
~Thank u Poops - sounds a great medication and could cover the many facets I experience.
Taking Loxamine 20mg for low mood - been on this 10 years.
So don't think the two will mix judging by list of side effects. Also it mentions any heart issues - will google that to see how/why it could worsen heart issues ~
I had to drop citalopram and amitriptiline to go on it. I can feel my anxiety bubbles more, but, yes. Check heart issues! Pregablin is a drug that seems better tolerated I think. 🌻
My rheumy told me that there were 3 types of drug useful for neuropathy (or the type I have...I don't have diabetes). Amitriptyline...which i am currently using, but it makes me like a zombie even on the lowest 10mg dose. It does help with the pain in my legs, feet and hands..but I probably need to take 20mg to make a difference and added to the brain fog i am then barely functioning. Gabapentin...which I have heard it has horrible side effects, and Duloxetine....which I have just been prescribed...but haven't started as I haven't researched side effects yet...hence still using the amitrip when I absolutely need to.
I guess it depends on how badly the neuropathy affects you. I know that some people get it really badly. Mine is burning feet and hands and aching calves. Often that turns into feet and calves that feel like they have been beaten up with a baseball bat and are throbbing painfully.
~Goodness puffyface you certainly sound you are having a rough time. I'm not that bad, just feel as though I'm walking on eggshells 1st thing in morning or when using bathroom during the wee small hours. Has slowly crept into other foot & careful now when out walking as feel I could trip @ times. Read somewhere on this forum that this prob is likely to originate from spine/spinal chord??
Not taking anything for it either nor diabetic & work hard @ keeping myself this way adhering to low carb diet. Despite best efforts have a pot tum
If that's all I have to worry about then all is well - I hope you find a solution soon - good luck ~
That( Amitriptylin) really helped me to sleep in the early years of PMR and made my body comfortable for sleep. I only realised that my sandpaper mouth was entirely caused by it when I weaned off it. This was just 10 mgs one hour before bed. The dry mouth side effect developed later on.
Hi Cobnut, I am sorry you are struggling with Neuropathy too.... It's the worst! I was 5 months into trying to deal with GCA & PMR, when I started to notice tingling in my feet and hands. It was maybe another 4-5 months that it turned into full blown crippling Neuropathy.
I have seen a local Neurologist 5 times, had two EMG tests, numerous blood tests, scans, and some kind of a genetic test, to see it it was hereditary. I've been prescribed gabapentin and then amatriptaline, but both made me feel just weird and out of sorts, so I stopped taking.
I was referred to a Nerve Clinic at Kings Cross Hospital, in London, where they want to do a 'skin punch biopsy,' but the lockdown put that on hold. They think I have Small Fibre Neuropathy with autonomic involvement, but want the biopsy to confirm.
My Neurologist, Rheumy and GP have all told me, it (the Neuropathy) IS NOT related to GCA, PMR or the Prednisolone.... I'm not sure I believe that and would love to know where you got that 14% figure, please!
I don't have the pins and needles all over my body, and can't imagine what that must be like for you! I am so sorry you have to deal with this... it is not nice, not nice at all!!!!! Best of luck.
I found various trial reports that have been carried out by googling neuropthy and there definitely seems to be a connection with GCA. My mother also suffered with GCA and until the end of her life never managed to get below 5mg pred. She was constantly complaining of pins and needles mainly in her head but her GP never tried to do anything about it. As current thinking is that GCA is a faulty gene trigged by something, I feel that the neuropthy is also inherited. I have always suffered with restless leg syndrome as well. Unfortunately the GCA also affected my kidneys which is unusual so I do not see a neurolgist for the GCA but go to a neprology consultant instead. The kidney problem also prevents me from taking certain drugs and because I take Microphnolate which is a drug given to transplant patients has rendered me one of the sheltered souls along with the prednisolone and diabetes I expect. This however is not so bad for me as I live in a rural village just outside Bridgnorth in Shropshire and have fields behind my garden. Im doubly lucky that my daughter and grown up grandchildren live nearby and pop round to the garden with my shopping and we shout to each other from the back door. It must be so difficult if you live in a city without a garden and I imagine each week makes it worse. Thank you all for your replies and if it continues to be bad I will contact my GP again.
I know exactly what you mean, nearly 4 years of GCA, beginning, at last, to feel more normal & more energised, I have also been getting the same symptoms, your description of 'sparking electricity under the skin' and sort of shooting pains in the head, is horribly familiar. I didn't realize it could be neuropathy, if it is in some ways that's a relief to have a name to it. I think the enforced lockdown doesn't help as not being busy makes one more aware of aches & pains!
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