Give me a break!

[Griggser]

So after contracting shingles in the eye over 4 & 1/2 months ago I’m still suffering with post herpetic neuralgia. Tried all sorts of drugs and a nerve block injection and nothing has helped. Initially the hospital upped my steroids from 12mg I was on to 25mg as they weren’t sure if it was GCA. After a couple of days it was reduced to 20mg. I’ve been taking baby steps and am down to 17mg and the hip pain is back. I’m struggling with the stairs particularly in the morning. I’ve hardly done anything in the last 4 & 1/2 months apart from eat, I’m always hungry, so have put the weight back on that I worked so hard to lose. I’m so fed up with it all and just could do with a break.

[Oldfogie]

When I had Shingles about 6 years ago I had dreadful Post Herpatic pain and was put on to Amatriptiline and it worked wonders. Talk to you GP about it. It is an anti epeliptic drug but is used more a d more as a pain killer.

[Griggser in reply to Oldfogie]

Thanks Oldfogie, I was put on amitripyline initially but had hallucinations. They put it down to the amitriptyline but I was on a cocktail of drugs. I’ve tried gabapentin and duloxetine with no noticeable benefit. I had a good conversation with my doctor and agreed to try amitriptyline again and took my first tablet on Saturday. I’m only on 10mg and no affect on the symptoms yet but I know it can take some time.

[MrsNails in reply to Oldfogie]

Actually it’s an old tricyclic antidepressant. These drugs were originally developed to treat anxiety and depression, but when taken at a low dose they can reduce or stop pain. Amitriptyline works by increasing the amount of serotonin your brain makes & work well relaxing the muscles.

[piglette in reply to MrsNails]

Amitriptyline is supposed to be the most prescribed drug in the world.

[MrsNails in reply to piglette]

Really? How Strange!.....

[piglette in reply to MrsNails]

I was surprised. I suppose the Covid vaccine may overtake it!!!

[Pollyanna16]

I am so sorry to hear you are still having an awful time. I know it’s hard but try and cut the carbs as much as you can, it’s worked for me, but ofcourse I am on a very low dose of pred these days. My heart felt best wishes for a change soon xx

[Griggser in reply to Pollyanna16]

Many thanks. I’ve done the low carb thing and list 3 stone doing it but just can’t be bothered with the effort involved at the moment. With the increased pref and being basically stuck in the house the only thing I have to look forward to is eating! No alcohol since this started either 😩

[Pollyanna16 in reply to Griggser]

I know it is quite an effort & you have to be in the right mindset 🙄 x

[MrsNails]

Oh Griggser So very sorry to hear this! What an awful time you’ve had/are having.

Re the Amitriptyline - take it about 7pm so it doesn’t give you the ‘hang over’ feeling the next day. I take 20mg Amitriptyline & have done for donkeys years, for my shoulder both pre & post PMR - l have had spells on 30mg but not for long. Taking it around 7pm gives it time to work & dispense with the side effects. They usually start you on 10mg & work upwards.

I really do hope & pray you improve soon, please say Hi to your lovely Wife 💐

Take Care & Hope You Get Well Soon

Angela 🍀

[123-go]

So sorry to hear this, Griggser. You've been dealt a rough hand!Of course, you won't be trying to reduce Pred right now and you will be getting advice from the experts here.

The hunger thing - is it really hunger or comfort eating? May I suggest that you keep a food diary? Look at what you eat and when and what triggers you to go to the fridge or the cupboard. If you can keep some healthy snacks (lovely crunchy carrot/celery sticks, a few unsalted nuts or half a dozen grapes)to go to when you feel the need to eat it may prevent you from diving into the biscuit tin 😏. It's been said that an incidence of food craving lasts 5 minutes so a glass of water with a slice of lemon may stave that off-and it's better for you-though not as tasty as a sugary inflammation-inducing chocolate biscuit or a calorie - laden slice of cake!

Come on, Griggser, you can do this!

[Griggser in reply to 123-go]

Thanks got taking the time to reply. Regarding advice from experts I was supposed to have a phone appointment with the rheumatologist in March but that was cancelled. I have rung the booking office a couple of times and been told I’m on the list! The last conversation I had with him he suggested I didn’t have PMR and in his opinion it was probably fibromyalgia, so I’m not confident of any good advice!

You’re probably right I’m comfort eating. I feel I still eat fairly healthy, lots of fresh organic veg, not much red meat. Snack on unsalted nuts and homemade seed crispbreads. I have been eating cake though and can’t resist apple crumble and custard.

I’m sure I can do it but need some relief from the pain to be able to get in the right mindset again👍

[123-go in reply to Griggser]

Yes, getting into the right mindset is a feat in itself and being in pain is your obstacle. It's not much comfort but you will get there sooner or later.Being told that "You're on the list" isn't at all helpful when you're struggling but this seems to be a sign of the times at the moment. I think you're right to inquire about an appointment from time to time and I'm sure that each time you mention the pain and its impact on your everyday life to drive the message home.

I do hope you soon move to the top of list and get answers to the is it, isn't it question mark over PMR. My best wishes to you. Keep us updated.

[Coffeebeans]

Sorry to hear you are still having trouble. I do hope things improve very soon.

[Lizwillis]

This is all so wretchedly soul destroying for you, you poor chap. Especially since it was not that long ago that you had been doing so well and, I seem to remember, had projects that you made. This is all unbelievably s…y for you and I can quite see that eating is actually a small comfort. Also that because you do need mental effort in trying to get on top of the eating, and that you have already done it with great success, you are not in that place at the moment.

It seems that if the medics could find something you can take which would help with the pain you are in, the rest would follow once you are more comfortable.

I can so sympathise with you, having got hit with one thing after another ( I got shingles for the second time about 18 months ago, whizzing to A and E two early mornings running in such incredible pain and both the medics and I thinking it was kidney pain, it was round my torso and not around my eye and face, for which I am eternally grateful). Various other painful things to contend with and, yes, you know what you should do eating wise, but absolutely no brain to deal with it! So I have lots to lose too.

Incidentally I now have discovered pain patches made by Lifewave which have helped me deal with dreadful pain that I was in last summer . Excruciating pain over the muscle over my left shoulder blade no sleep for six weeks either. Tried physio, tried a Tens machine and tried a Shiatsu massage machine. I still have residual pain due to shoulder impingement and torn tendons but can’t face any more surgeries.

I am wishing you all the best in this horrid ongoing pain trauma and hoping that something will help you get back to how you were. Thinking of you.

As you so rightly say, you just need a break.

[Griggser in reply to Lizwillis]

Thanks Liz, I know I’m not alone in this journey! I have lidocaine patches that I use on my forehead and have a Tens machine which I tried by placing the pad on the back of the neck as suggested for migraine but it did nothing. My doctors also gave me tramadol to try but that doesn’t really seem to help!

I hope you get back to normal soon.

[Lizwillis in reply to Griggser]

Oh goodness Griggser, what a lot of medication to try and help with the pain. I too was prescribed Tramadol and other even stronger pain killers, but nothing touched the pain, not only that but they bunged me up and was then given stuff to cure that! Not happy about that as I have an awful lot of diverticulitis pouches which don’t need much to set that off!

So, as a result now have to eat quite a lot of fibre so the low carb thing is not good for me ! ( mind you it would help if I cut back on chocolate things, but it is what it is at the moment!) You can only do what you can manage at the moment can’t you, with so much other stuff, pain related, going on.

I do hope you will be able to get back to whatever “ normal” might be too!

[PMRpro Ambassador]

Sorry to hear you are struggling.

How did the pred work right at the start? Fibro really doesn't respond much to pred, if at all.

The hip pain sounds suspiciously greater trochanteric pain syndrome-ish. I linked to this good article recently:

yourphysio.org.uk/condition...

[Griggser in reply to PMRpro]

Hi PMRpro, all hip pain went completely when on 25mg and at 20mg also. I noticed a bit of pain at 18mg and at 17mg it’s back to very uncomfortable levels.

[PMRpro Ambassador in reply to Griggser]

Has the hip pain been investigated separately from the PMR?

[Griggser in reply to PMRpro]

Various X-rays over the years and a couple of mri scans have shown no issues 🤷‍♂️ There was talk of truncanteric bursitis but that was ruled out as well. When PMR was diagnosed 7 years ago and pred was prescribed within 8hrs of taking 15mg all the pain went.

[PMRpro Ambassador in reply to Griggser]

How did they rule out trochanteric bursitis? It is commonly found alongside PMR but nowadays they have extended it to be more than just the bursa but to include lower back problems.

[Griggser in reply to PMRpro]

I don’t recall how it was ruled out but I do recall it being investigated a couple of times. I’ve had lower back problems over the years and about 30 years ago I had an operation on my back for a burst disc at L5.

[Viv54]

So sorry to hear this , a friend has just been something very similar, you will be glad to know hers started to get better around the 6 month mark ! As for the weight i understand, this happened to me , i ended up putting on 2 stone , i was constantly starving ! Good news is as the steroids drop so dose the weight , just keep an eye on what you eat. Hope this helps. Best wishes Viv.

[Griggser in reply to Viv54]

Thanks Viv, I lost 3 stone by going low carb but put some back on. I then cut out sugar as much as I could and got to my target weight of 14st 4lb. Since getting shingles and upping steroids I’ve put a stone on🙁 I know I get back to where I need to be but need a break to have the strength to do it. I’m hoping to see improvement soon and like your friend I’ve been told the 6 month mark is hopeful.

[S4ndy]

Sorry to hear you have been left with pain following shingles. My dose of Amitriptyline was 50mg which did deal with the neuralgia but gave me morning hangovers. I took mine at 7pm so that it wasn't too bad in the mornings.

I have taken Amitriptyline for years. Low dose for spinal nerve pain of 10mg. I am now down to 25mg as gradually reducing to get back to the low dose.

The Amitriptyline seems to have an effect on my carb cravings and weight too. Since reducing I have been able to lose a stone on the 5:2 diet. Still a long way to go weight wise but it's a start and the diet is a lot easier to deal with than anything else I have tried.

I am still having trouble with mobility and exercise is difficult. On good days I can ride my electric bike on bad days I can nearly walk. So losing weight is difficult for me as I need a degree of physical exercise to help the weight loss. Also well aware that on bad days I want to turn to food for comfort which really doesn't help.

The one thing I will say is that I try not to beat myself up over my malfunctioning body as this just adds another level of suffering!

Hope you feel better soon x

[USAGCA]

You might still have active virus. Consider valacyclovir. Also consider pregabalin for the pain.

[Griggser in reply to USAGCA]

Thanks for you’re reply. I’m taking Valacyclovir and discussed pregababalin with my GP and we agreed to go down the amitriptyline route first taking into account side affects.

[USAGCA in reply to Griggser]

OK, pregabalin can make you very unsteady on your feet but it has the added benefit of alleviating hot flashes.

[Griggser in reply to USAGCA]

Ha ha at least I don’t suffer with hot flushes , but my wife has😃

[USAGCA in reply to Griggser]

😀 yes we generalize that all of us are female.

[Lochy]

I do feel for you Griggser. I’m not dealing with anything like yourself but I can sense your frustration and feeling of helplessness. I only appear to have PMR but having been suffering for 5 years now with various bumps and falls along the way I know how fed up I get. So just wanted to say I’m thinking of you and I always enjoy reading your posts. You have a knack of injecting some humour which isn’t easy and always brings a smile to my face. Good luck and I’ve got everything crossed that it all gets better soon.

[Griggser in reply to Lochy]

Many thanks Lochy and I hope you get some relief from this awful condition.

[Grammy80]

Hello, I'm a GCAer and also had shingles over one side of my face, in my mouth and nose!! I was really concerned as it was all around my good eye. I see that you have tried Gabapentin. That was the only thing that gave me relief. My dosage was 100 mg am and 100 mg pm, I don't know how that compares to what you took. Really sorry and I can relate💖

[Griggser in reply to Grammy80]

I was on the max dose of 1,200mg 3 times a day (3,600). In addition I was also on Duloxetine 30mg twice a day. Along with anti viral valiclovir, lidocaine patches and Tramadol along with numerous eye drops.

[Grammy80 in reply to Griggser]

Wow....it is amazing you have any recollection of that time at all!! That is a load of meds designed to make you comfortable. I'm surprised you were able to stay awake. So sorry!

[Griggser in reply to Grammy80]

Thanks for your good wishes. The bummer was taking all those drugs and getting hardly any relief.