Am I going mad

Geoff71

Hello everyone
before I go any further please excuse my spelling
I havnt been on here for a while and to be honest Im really struggling. Lots of changes to medication and still no further forward. For the past couple of months I have been taking Persidone, amitripline and alloprinoll. Imflamation lelvels have dropped and the pain in affected joints have reduced but if I go for a short walk etc it returns. Anyway I wonder how many of you take any of the above medication and if you suffer from any side effects. I dont know if its the meds or somthing more sinister but i get an uncomfertable feeling in the head (not pain but its not nice) and behind the eyes its not all the time but on a daily baisis. Also my arms and legs do feel heavy?, shoulders and neck ache a lot of the time and the list could go on. I feel very stressed/ anxious and about the the whole situation and life is getting unbearable I feel a complete burden. I s there anyone else having the same problems?
Geoff

skezier

hi Geoff,

nice to see you again and your not going mad.

i am not on those drugs but did take preds for a few months back along and got the aches in the joints and muscle as with a really heavy feeling.

not saying its those that are doing this but it does sound like a drug reaction of sorts. maybe gong back to your go and talking about it might help? its could be you need a different set of tablets and though its hard try not to get anxious cus that will make it all feel worse.

you probably ought to go see your gp or try and get an appointment with your rumo? thats what i would do were i you and its what i did with the preds as well. they don;t suit everyone and well its best you go and see you gp.

hope it will improve for you and let us know how you get on please. Cris x

dreamdaisy

Mad? You? Far from it, I take it you have a form of arthritis, the meds are pretty strong, the side effects can be too and as for the pain - well, for me that never goes, not even briefly. The dullers blunt the sharpest edges, the stronger the dullers the more they blunt but they don't - and can't - take it all away. Don't struggle on your own Geoff, come and talk to us because we do know what it is like. Rest assured you are not barmy, neither are you a burden: as skezier suggested talk to your GP and/or rheumatology team about your feelings etc, maybe a meds review could be in order. I wish you well. DD

valval

as cris says the meds we take often have an affect on brain but you do not want to be feeling this way so talk to gp even if it on phone (i can do that with mine great help when feeling that way) good luck val

Mat48

Hi Geoff - sorry you are suffering so. I feel similarly placed and relatively new undiagnosed so can't help much but just want to offer you my support as fellow limbo person. Have you had a diagnosis yet out of interest? I take amitriptyline 10mgs but am now on a short relatively high dose of Preds too.

I forgot to take the Amitrip last night and have been up all night as a result. I realise now that steroids give me extreme mood swings because I had them before when on Kenalog and am not prone to depression otherwise. Finding out that my inflammatory markers have come down to almost normal yesterday made me feel like a complete fraud - or like everyone else will think i am one anyway. And then in turn I found myself eaten up with fury at my body which really isn't good. So confusing isn't it? I don't want this disease whatever it is - but nor do I want to be going insane? Stuck between a rock and a hard place really but I'll find a way out because that's what have to do and it will make me a stronger, better person somehow someday. Hope you can feel the positive message in this too?

Hang in there and go back to your GP and tell him/her about the head thing which sounds horrid and all the rest too. I'm hoping to get an apt today with my GP but failing that will try and speak to him on the phone because it can't be right going from an infinite blue sky to feeling like jumping in to a black hole so I do understand very much how you feel. You are not alone. Please take care. Mat x

julie47

Hi Geoff

sorry to read that you feel so down, I cannot help with the meds as I am not on those. I hope you decide to take everyones advice and make an appointment with your gp.
I just wanted to drop in and say I hope you start to feel better soon.

Juliepf x

traluvie

Hi Geoff,

Sorry to hear you aren't feeling to good at the moment..
As the others have suggested it may be a good idea to see your GP talk through with them what is going on..
Hope things improve for you..

elnafinn

Hi Geoff

Welcome back to the forum. I am sorry to read that you are down and that the meds are perhaps not agreeing with you. As others have said I think you should return to your gp and discuss how you are feeling. Do you suffer from gout as I think the last med you mention is prescribed for that?

Did you have a fusion in your ankle? I think that may have been on the cards some time ago for you.

Amitript that you are taking, makes me feel sluggish in the morning, regardless of when I take it the evening before (25mg). I am weaning myself off that at the moment (my choice and with gps consent) and although I am not perhaps sleeping quite so well, I am finding that I feel much more "alive" in the morning on awakening.

Do let us know how you go on,

Elna x

barbara12

Hi Geoff
Its good to have you back...although I am sorry you are suffering, I take amitryptalines...I hate spelling that word...they give me the feeling of not being with it..and so forgetful...I am not sure if it down to the meds or my age...but someone else said the same about them, has for your other meds...sorry I cant help there, hopefully you will get some answers very soon.

Mat48

Yes I think the amitriptylines are quite heavy going for some so that might account for your weird head sensation although I don't know about the other drugs you're on. I do know I forgot to drink water with one once and it lingered in my mouth like a little blue devil and by the time I'd realised (after 30 seconds aprox) my whole mouth had gone numb! Makes you wonder eh? :???:

frogmorton

Hi Geoff

Good to see you again, but so sorry you are feeling so rough at the moment and well...out of sorts.

The only one l take is amatrip and l am ok on that one, but when l have taken prednisilone in the past it has made me feel pretty odd.

Maybe it would be an idea to get back to your doc and discuss your medication. Things don't seem 'right' do they?

Of course you might find it helpful to talk to someone on the helplines :
0808 800 4050
Love

toni xx

Geoff71

skezier wrote:

hi Geoff,

nice to see you again and your not going mad.

i am not on those drugs but did take preds for a few months back along and got the aches in the joints and muscle as with a really heavy feeling.

not saying its those that are doing this but it does sound like a drug reaction of sorts. maybe gong back to your go and talking about it might help? its could be you need a different set of tablets and though its hard try not to get anxious cus that will make it all feel worse.

you probably ought to go see your gp or try and get an appointment with your rumo? thats what i would do were i you and its what i did with the preds as well. they don;t suit everyone and well its best you go and see you gp.

hope it will improve for you and let us know how you get on please. Cris x

hi thanks for your kind words - off to the rhumy on tuesday so whatch this space! at the momemt im up and down like a yoyo- its hard to get my head round the fact that this is now my life, i get get really fed up because even doing some of the simple things in life are difficult - Im hanging on to my job so i can provide for my family etc . any way thank you

Geoff71

dreamdaisy wrote:

Mad? You? Far from it, I take it you have a form of arthritis, the meds are pretty strong, the side effects can be too and as for the pain - well, for me that never goes, not even briefly. The dullers blunt the sharpest edges, the stronger the dullers the more they blunt but they don't - and can't - take it all away. Don't struggle on your own Geoff, come and talk to us because we do know what it is like. Rest assured you are not barmy, neither are you a burden: as skezier suggested talk to your GP and/or rheumatology team about your feelings etc, maybe a meds review could be in order. I wish you well. DD

thank you - this blogging lark (or whetever it is) does help - off to the rhumy next week so lets see what happens

Geoff71

valval wrote:

as cris says the meds we take often have an affect on brain but you do not want to be feeling this way so talk to gp even if it on phone (i can do that with mine great help when feeling that way) good luck val

thanks val will update next week

Geoff71

Mat48 wrote:

Hi Geoff - sorry you are suffering so. I feel similarly placed and relatively new undiagnosed so can't help much but just want to offer you my support as fellow limbo person. Have you had a diagnosis yet out of interest? I take amitriptyline 10mgs but am now on a short relatively high dose of Preds too.

I forgot to take the Amitrip last night and have been up all night as a result. I realise now that steroids give me extreme mood swings because I had them before when on Kenalog and am not prone to depression otherwise. Finding out that my inflammatory markers have come down to almost normal yesterday made me feel like a complete fraud - or like everyone else will think i am one anyway. And then in turn I found myself eaten up with fury at my body which really isn't good. So confusing isn't it? I don't want this disease whatever it is - but nor do I want to be going insane? Stuck between a rock and a hard place really but I'll find a way out because that's what have to do and it will make me a stronger, better person somehow someday. Hope you can feel the positive message in this too?

Hang in there and go back to your GP and tell him/her about the head thing which sounds horrid and all the rest too. I'm hoping to get an apt today with my GP but failing that will try and speak to him on the phone because it can't be right going from an infinite blue sky to feeling like jumping in to a black hole so I do understand very much how you feel. You are not alone. Please take care. Mat x

hi there, they havnt really told me what type it is the rhumy says its gout and if thats the case it been going on for 18m -2yrs my anckle specialst says its RA they both work at different hospitals and you know what they refuse to talk to each other! I try to keep positive but every know and again especially when i get a flare up i go back doen again - I worry as i have 3 very your children and i want to be there for them and provide etc

Geoff71

julie47 wrote:

Hi Geoff

sorry to read that you feel so down, I cannot help with the meds as I am not on those. I hope you decide to take everyones advice and make an appointment with your gp.
I just wanted to drop in and say I hope you start to feel better soon.

Juliepf x

thanks julie x

Geoff71

traluvie wrote:

Hi Geoff,

Sorry to hear you aren't feeling to good at the moment..
As the others have suggested it may be a good idea to see your GP talk through with them what is going on..
Hope things improve for you..

Thanks Tracey

stickywicket

I hope your rheumatology appointment next week is a good one and brings you some relief from all those nasty symptoms, Geoff. This stuff is bad enough on its own without all the side-effects of meds.

Geoff71

barbara12 wrote:

Hi Geoff
Its good to have you back...although I am sorry you are suffering, I take amitryptalines...I hate spelling that word...they give me the feeling of not being with it..and so forgetful...I am not sure if it down to the meds or my age...but someone else said the same about them, has for your other meds...sorry I cant help there, hopefully you will get some answers very soon.

so do I you take it easy too, its not nice not feeling with it

Geoff71

Mat48 wrote:

Yes I think the amitriptylines are quite heavy going for some so that might account for your weird head sensation although I don't know about the other drugs you're on. I do know I forgot to drink water with one once and it lingered in my mouth like a little blue devil and by the time I'd realised (after 30 seconds aprox) my whole mouth had gone numb! Makes you wonder eh? :???:

doesnt it just - do we really know what we are putting in our bodies

Geoff71

frogmorton wrote:

Hi Geoff

Good to see you again, but so sorry you are feeling so rough at the moment and well...out of sorts.

The only one l take is amatrip and l am ok on that one, but when l have taken prednisilone in the past it has made me feel pretty odd.

Maybe it would be an idea to get back to your doc and discuss your medication. Things don't seem 'right' do they?

Of course you might find it helpful to talk to someone on the helplines :
0808 800 4050
Love

toni xx

Thanks Toni I will call again - I did call when i 1st joined i think its time i made another call xxx

Geoff71

AM I GOING MAD SAGA PART 2

Well I visited the Rhumy yesterday so I thought I would give you an update. Explained all my symptoms and how it was making me feel (stiff, shoulders, sore neck, pressure in the head and the occasional stabbing behind the eyes etc), I was told that I have inflammatory arthritis ( last appt it was gout) what’s all that about?. “prescription pad at the ready” . I have now been prescribed with METHOTREXATE as well as or the other meds (amitrip, alloprurinol, steroids). So I’m going to give that a bash. If any of you fancy opening a franchise of Boots the chemist please give me a shout. In the next couple of months I reckon I’m going to be rattling!. I am trying to be positive but I must admit I cant see the wood for the trees at the moment . Any way just wanted to let you all know, after my last post I didn’t feel as alone with it all and I appreciated your kind responses. Speak to you all soon. XXXXXXX

PS if any of you are based in Bedfordshire I would love to meet up with you

YOYO

Geoff71 wrote:

Hello everyone
before I go any further please excuse my spelling
I havnt been on here for a while and to be honest Im really struggling. Lots of changes to medication and still no further forward. For the past couple of months I have been taking Persidone, amitripline and alloprinoll. Imflamation lelvels have dropped and the pain in affected joints have reduced but if I go for a short walk etc it returns. Anyway I wonder how many of you take any of the above medication and if you suffer from any side effects. I dont know if its the meds or somthing more sinister but i get an uncomfertable feeling in the head (not pain but its not nice) and behind the eyes its not all the time but on a daily baisis. Also my arms and legs do feel heavy?, shoulders and neck ache a lot of the time and the list could go on. I feel very stressed/ anxious and about the the whole situation and life is getting unbearable I feel a complete burden. I s there anyone else having the same problems?
Geoff

Hi Geoff, we have all been there, dont give up! I used to take Amitriptyline 25 to 50mg dose to help me sleep with pain of RA? is this the same med as you? I found after 18 months of taking this drug that it contributed greatly to my very low and depressed state? I didn't want to do anything except go back to bed and sleep my life away! the dreadful tiredness and low feeling along with a fuzzy head came on me the next day, after a good nights sleep and nothing could stop me going back to bed and sleeping for England! I'm not saying this is the reason you feel so low but maybe investigate the possibility. I was scaredf stiff of stopping them but nothing dreadful ahppened and I feel 100% better mentally, I only get the terrible tiredness when in a flare and the fatigue sets in then. Hang in there and use this site, it has helped me tremendously and i have only been a member for a week or so! Best wishes YO xxx

elnafinn

Hi Geoff

I am worried about you taking those drugs and now having metho added to your concoction. It does not sound good either to me you seeing two consultants at different hospitals especially if there is no liaison between the two of them. Are they both aware what each one is prescribing for you to take?

On reading up about Prednisone - its use can affect the eyes and bring on depression. I believe you should have occasional eye checks if on this drug. The consultant prescribing this to you should be made aware that you are suffering with eye problems and that it is causing you to feel low.

Amitriptyline can make you feel tired and cause blurred vision.

Perhaps it may be a good idea to have a word with your GP and tell him your worries, like you have told us.

I expect you are aware that neither Prednisone nor Amitriptyline should be stopped immediately but the dosage slowly reduced before coming off them completely.

Elna x

elnafinn

Hi Geoff

Allopurinol can cause irritation of the eyes and can cause tiredness.

Elna x

Geoff71

elnafinn wrote:

Hi Geoff

I am worried about you taking those drugs and now having metho added to your concoction. It does not sound good either to me you seeing two consultants at different hospitals especially if there is no liaison between the two of them. Are they both aware what each one is prescribing for you to take?

On reading up about Prednisone - its use can affect the eyes and bring on depression. I believe you should have occasional eye checks if on this drug. The consultant prescribing this to you should be made aware that you are suffering with eye problems and that it is causing you to feel low.

Amitriptyline can make you feel tired and cause blurred vision.

Perhaps it may be a good idea to have a word with your GP and tell him your worries, like you have told us.

I expect you are aware that neither Prednisone nor Amitriptyline should be stopped immediately but the dosage slowly reduced before coming off them completely.

Elna x

Hi Elan

I have booked a GP appoinment for next week so lets see what happens. I will also book a sight test just to make sure that side of things are ok. I do need to get on top of this and start some positive thinking! I will keep you all posted- I must admit using this has helped me vent my frustration!
speak soon