Flair

[bones-bones]

Feeling really rotten today. Even my nice hairdresser agreed when I looked in the mirror and told him he was watching me deteriorate (he has a great sense of humour)

Why do they have huge mirrors in hairdressers? It's not kind.

Anyway getting back to the subject . I take Hydroxychloroquine, Mycophenolate and fairly low dose of Amitriptylene. I suspected the Ami was causing my light headedness so halved the dose. That helped but now the peripheral neuropathy is back to it's evil

self. My GP says it's checks and balances which of course is true. I have chosen to not to up the Amitriptylene again so I am unbalanced. I don't think I safe to be out without a stick but I hate it.

Today I'm so tired I can't do anything this afternoon. I have lost a stone as I don't have any appetite. Losing weight can only be good for me though !

My husband has been abroad for a month so I am trying to hold things together but it's not easy.

My brain has turned to tapioca...I nearly gave my ancient dog one of my sleeping pills by mistake this morning....I just don't know why !

Returning to my main point can we have flairs when we take all these drugs ?

Thanks for being there and reading this ramble.

[Lupiknits]

Yes, we - or at least I - can flare even with the meds. I know what you mean about the hairdresser's mirrors. I have never liked them, and like them even less now. I generally look at my hairdresser in the reflection rather than me.

You say you've lost weight, partly from not bothering with eating. Weightloss can be helpful if you need it, but nutrition is always a must. I struggle with being underweight and have researched as well as I can on nutrients. It's extra important for our physical health.

As to the foggy brain, well yes, I think a lot of us can get that. I find quite a lot of friends withouth health problems having foggy days, so I don't worry too much about being absent minded.

Do you take a sleeping tablet as well as amitriptyline? They can make you woozy.

Anyway, hug from me x

[bones-bones in reply to Lupiknits]

Thank you Lupiknits. Yes I do take both. Amitriptylene in early evening and SP when I go to sleep. My feet are like red hot bricks later in the day.The hope is that Amit. might stops them bursting into flames ! I have always been a lousy sleeper so e very little helps.

[Hidden in reply to bones-bones]

Mine just have to burst into flames I'm afraid - hands and mouth too! 🔥🔥🔥

I'm sure you know that Amitriptyline and all the other nerve pain drugs can't stop or slow the progress of small fibre neuropathy (SFN) - they only help with the burning pain.

So the reason the balance of those of us with SFN is affected by these autoimmune diseases, is usually because the small nerve fibres die off and cause loss of sensation as part of active disease. Even very minor nerve damage can affect our proprioception - meaning our peripheries aren't receiving the correct signals to tell us when I feet are touching hard surfaces, steps etc -which in turns causes us disequillbrium.

So Amitriptyline may cause dizziness as a side effect of the sedative in the drug and it may also help with the burning pain - but it can't ever regenerate the tiny nerve fibres.

This is the job of the Mycophenolate - because the SFN is a type of inflammatory neuropathy caused by Sjögren's or Lupus. So it takes a disease modifying antirheumatic drug to to reduce the inflammation - which should in theory then prevent our SFN from progressing. That's the theory anyway! However I guess that if it works then the burning pain may worsen as some of the nerves regenerate. I asked my rheum if the worsening of my pain might be due to the effectiveness of the Mycophenolate and she agreed it could we be and increased my dosage! Pain means life, numbness is what my neurologist calls "a negative symptom" because it equals ireversible nerve damage.

So this is where pain relief or Amitriptyline or Gabapentin or whatever - come in if you can tolerate them. But I keep telling myself that pain is a positive sign because it means my nerve fibres are still alive at least!

Anyway It's a pain I just have to live with because, for me the side effects and severe intolerances to these type of pain relief drugs such as Amitriptyline, are too bad. I can live better with my entire body burning than I can with altered brain patterns causing mood swings and being dizzy with drug induced exhaustion.

But anyway I just wanted to say that Amitriptyline will not help prevent numbness or disequilibrium. It will only help stifle the pain, have a sedating effect and sometimes cause weight gain and palpitations. For me Deep Freeze gel, keeping peripheries cool (but not cold!) in run up to bed time and one 7.5 Zopiclone are as good as things get with SFN flares! X

[bones-bones]

Yes it's what they call ' a bummer' isn't it ?

Mine seems get worse even with 25mg. Amitriptylene. At least with a walking stick .....which I hate....I can walk without falling over. It also affects my face to a degree. It hasn't set upon my hands..yet.

I am now losing weight which I have been trying to do for ages. My GP tells me not to bother as I'm never going to be a sylph (I'm73) But the drugs seem to be doing it without my help.

I have used a bag of frozen peas for my feet. It did help a bit. I'll try

Sweet corn next time !

[Hidden in reply to bones-bones]

Best not to use frozen anything Bones as this stimulates the nerve fibres same way as heat does. Best just soak them in tepid water for five minutes or more. Someone did tell me that a hot soak followed a cold soak immediately, can reboot the circulation and , when the pain was particulately severe I did do this. But now I just find that tepid soaking helps more.

I'm going up to 3000mg of the Myco just now. I stopped using a cane about six months ago when my balance improved a lot. But I'm only 54 so maybe it could affect me differently if I get to 73 - which no one in my family ever has! X

[Rusty8 in reply to bones-bones]

Hi bones hope you are reasonably ok and plodding on glad to hear you can still get around a bit

I'm texting you because I a am72 and feeling miserable at moment

I have to learn to get over hurdle I am now facing and I thought talking to yo might help

I have numerous problems that I have overcome i.e. Kidney transplant a/f knee replacement 4 hip replacements spinal stenosis and now spine fractures oestiporosis etc

Have been told by doc a lot of people die in pain as it can't be treated I think I understood what he was saying but I can manage pain in house with crutches after I have taken morning pills but I am having to give up car and can't walk around outside

This is what I am finding very hard

Should I be thankful for what I have got and realise this life is not going to change

Sorry for ranting to you why I have I don't know it was the age that caught me sorry

You take care

[bones-bones in reply to Rusty8]

Hello Rusty...I have just written a reply but managed to delete the whole thing so I'll start again.

You have been through such a lot I'm not surprised you're fed up. Were all the operations a success ? 4 hip replacements ? Am I talking to a horse ?

A bad back is horrible...your back is certainly in the wars. Do you take strong painkillers ?

I don't know what kind of doctor told you lots of people die in pain. Not a very good one by the sound of it. Some people do of course which is sad. I have been there when my parents died and also several old friends and all had

peaceful,painfree deaths. Often it's down to skill of the doctor or nurse.

Not being able to drive is something I dread but mostly because we live in the country and only have two buses.

I use a stick these days to steady my balance. I hate it but I should be grateful for it.

Have you though of getting one of those little motors that you can take to the shops ?

My advice to anyone is don't get old. The years creep

up on you when you're not looking.

We seem to be keeping the pharmaceutical companies in clover but I suppose we would be worse without the daily pill round.

Yes we have to be thankful for what we've got and try to cope with the rest . A good GP is worth an awful lot. I hope you have one.

So we will gently totter on being careful not to fall over the cat......

I hope you will soon feel a bit happier. Keep in touch with us.

[Rusty8 in reply to bones-bones]

Thank you very much for replying it does help to start my morning of when I sayb4 hip ops I mean one was where it was pinned one a bone graft and one a total hip replacement then one one a acetabuler replacement I'm all screws etc

Are you from the uk or elsewhere I'm from the uk so my pills are paid for

What I would do without the Nhs I do not know I do know they are struggling at moment frightening for us as we have always been used to goingbdocs picking up prescription then picking up pills at a very reduced cost

But thanks anyway it's surprising what hearing from other people can do

Hope you have a good day

[Sara_A]

Do u take ur amitriptyline before bed? I find this is better as it makes me bit drowsy and sleepy.