Date: 07.12.2013
From: karen
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Subject: In tears, pain & tired!!
So my ra is in remission but have been told I prob have a connective tissue disorder Feel exhausted but when I rest I get stiff, having bad sleep due to pain but am in catch 22, want to sleep to ease the pain but it almost makes it worse So sorry to moan as Im sure there a lot of people worse off but seems like the only people that understand are the people who know how it feels as seems like it is an invisible disease as people cannot 'see' the pain you are in, I hide it well but am suffering lots! :-(
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Date: 07.12.2013
From: helen
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Subject: Re: In tears, pain & tired!!
I feel ur pain. Iv also had a rubbish week. Life is hard enuff but when in pain and some people don't understand as they don't see the pain and wot its doing to you inside is hard to take some days. Stay strong I hope you get some help and answers to your pain soon. Helen. X
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Date: 08.12.2013
From: karen
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Subject: Re: In tears, pain & tired!!
Thanks Helen, felt very sorry for myself yesterday but today I have too much to do today and resting doesnt seem to help anyway! so Im going to dig out the strong pin killers, although they make me feel sick, and get on with it.....trying to stay positive but sometimes feel very low especially when I cant do what I need to! I see consultant in Jan so will hopefully get my dx as bloods are back...hope you have a better week next week.. Thanks for replying x
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Date: 08.12.2013
From: Emm
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Subject: Re: In tears, pain & tired!!
Karen, sorry to hear of your pain and suffering.
We all understand as we identify with it. Big hugs for you, good luck for January and hope you get some help from consultant. X
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Date: 08.12.2013
From: karen
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Subject: Re: In tears, pain & tired!!
Thanks Em, am thinking of ringing the rheumy nurse to see if I can get a steroid injection, it helped massively with my ra, wondering if it does the same for ctd, if it is that.......x
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Date: 09.12.2013
From: karen
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Subject: Re: In tears, pain & tired!!
So last night was hell, but this morning has improved massively! Strange??!!
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Date: 12.12.2013
From: karen
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Subject: Re: In tears, pain & tired!!
Yay! Getting a steroid jab this morning, hope it brings some relief....its worth a try as wrists, neck & shoulders are killing me!
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Date: 12.12.2013
From: Emm
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Subject: Re: In tears, pain & tired!!
Hope it works, they usually do for me.
Maybe you will get relief until after Christmas, so you can enjoy it a bit better. I am at hospital on Tuesday and gonna ask for a shoulder and ankle one. Although I had an ankle one once before and it didn't work.
He did say ankle ones are not always as successful as other joints.
Here's hoping we both get pain free! Emm x
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Date: 12.12.2013
From: karen
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Subject: Re: In tears, pain & tired!!
:-( Didnt get one in the end, after seeing bloods dr said he wants me to have weekly bloods until my app in Jan, my vit d is very low, 38 when its meant to be about 400.....thought Id get some relief but no.......:-( Hope you get one Emm x
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Date: 16.12.2013
From: helen
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Subject: Re: In tears, pain & tired!!
Hello Karen just checking in on how your feeling. Helen x
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Date: 29.12.2013
From: karen
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Subject: Re: In tears, pain & tired!!
Hi Helen Thanks for asking, its been very strange, I woke up one morning & felt better....I enjoyed that week but then yesterday I started to feel the fatigue/aches coming back, not happy! Got consultant app on thursday so hopefully get some answers.....hope you had a nice Christmas, how are you? x Karen
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Date: 30.12.2013
From: helen
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Subject: Re: In tears, pain & tired!!
Hello Karen glad you had a good couple of weeks. I'm rubbish and have had tears from pain tiredness and generally feeling down. I'm on a two mounth script of steroids and still no treatment for arthritis as bp too high kidneys arnt behaving either think its to do with bp or I hope. My fibro has been stalking me and last night it attacked me good and proper. Pain unbearable diaxepam and swigs of oramorph didn't even take the edge off. Slept on&off today.
Karen I hope you get on OK at your appt write a list it will help as once sat in chair they bomb bard you with does it hurt here there everywhere pain marks outta 10 you can come outta the room without any answers. Happy new year to you and all.
Helen. Xx
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Date: 13.01.2014
From: karen
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Subject: Re: In tears, pain & tired!!
Hlen, sorry to hear you have been feeling so bad, hopefully by now, you may be feeling a bit better? Naughty kidneys lol, have you something wrong with them then? I have to go for some muscle tests....something about electrodes, gulp! Consultant said I tested positive for rnp? He said it indicates mixed connective tissue disorder but further tests will show more Hope you are reading this feeling better, Karen x
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Date: 14.01.2014
From: helen
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Subject: Re: In tears, pain & tired!!
Hello Karen. Glad the drs/consultants are checking all areas. Its just a waiting game which really doesn't help you. Never had problems with kidneys or liver but was on sulpher....last year and completely messed me up with awful side effects very frightening at the time. So i think they have been damaged in some way. Anyway had news last week I'm going on luflumimide but being extra monitored with bp. Rubbish WK last WK had taken to my bed my back had gone arthritis and fibro flare they decided to play altogether in me. Quiet wkend and I felt quite good this morning started flagging by late afternoon.
Thanks for updates nice to be remembered.
Take care and chin up
Helen. Xx
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Date: 14.01.2014
From: willis
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Subject: Re: In tears, pain & tired!!
Hi Karen and helen
sorry to hear you are suffering so much. When do you go back to see consultant for any more results Karen? have the advised you of what pain relief you can take if any?
Helen a friends daughter has Fibro and her days are so random of fine then extreme pain etc
When do you start the luflumimide? Does the cold weather affect you both and make your symptoms worse?
Karen you may think that there are people worse off but it doesn't detract from your pain.
Never feel guilty for being in pain or thinking that you shouldn't feel the way you do because of this.
The pain we get is individual to us we cant' compare it to others.
Only saying this because I thought that too but trying even to tell myself that others out there or on this forum are feeling worse than me doesn't help me when trying to be in control of my pain. hope that makes some sort of sense.
I hope you are both feeling even a little bit better today and I hope that relief is close by.
hugs to you both xxx
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Date: 14.01.2014
From: helen
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Subject: Re: In tears, pain & tired!!
Hello Willis. I started luflumimide sat so every other day for a month or so. Side effects started last night so up on the loo and that Sicky feeling. That's just the 2nd tablet hope it wears off once in my system. I don't get on taking meds I always seem to suffer and its mainly my gut that disapproves with the tablet. Fibro is nasty it can come from nowhere today my back pain is coming in spasm then the nerve muscle pain started so prepared casserole put in oven to cook and took myself to bed and slept.
Willis hope your OK.
Helen. Xx
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Date: 15.01.2014
From: Willis
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Subject: Re: In tears, pain & tired!!
Hi Helen hope you got some decent rest and pain relief for a while
My stepson has fibro -mostly affects his stomach but obviously whole body is sore
Friends daughters came to light when she had a baby 8 yrs ago, just had another and fibro there all the way through n still getting her.
It's a non entity illness in many ways - took hospital 4 yrs before the gave s/son that tag :/
I was given Suflazine thingy at one point for RA but horrendous side effects so stopped it
On humira and methotrexate now - improvement made but still all the aches pains weariness etc good ole Arthur - he's like a squatter that won't move out
Hope your casserole was yummy n you get some good results from meds soon
Big hugs x
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Date: 15.01.2014
From: helen
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Subject: Re: In tears, pain & tired!!
Thanks Willis. Yes casserole was yummy enuff over for hubbys lunch for work bit warmer than a sarnie. I was only diagnosed with fibro last sept. I did have thoughts before but was diagnosed psoriatic arthritis instead then year after saw yet another registra who came out with this diagnosis that was that a leaflet and go home. Iv had aches and pains for many years thinking about the symptoms have been hanging out with me for years. The weight has crept up and up also having quite a few steroids so nice round face. Not working so less mobile hence weight gain and then another tablet pregabalin helps put on weight. The list and moans go on. Its hard to get going then the pain then the tiredness you sit you sleep go to bed and don't sleep hence I'm chatting at 1.30am!! I try to do things in the morning then start flagging around lunchtime but at least iv done some jobs or just having a coffee with friend or mum. I used to be so active I do miss my life before all this its a complete change in lifestyle I did have. Oh well just have keep plodding on. Drugs.... iv been on sulpherzalizine and then methotrexate but awful side effects and crp was still rising so hoping third time lucky.
Good to chat.
Helen. X
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Date: 15.01.2014
From: Willis
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Subject: Re: In tears, pain & tired!!
Hi Helen, well I know the feeling of being active previously. I only had two speeds 100mph or stop. Now it's slow or stop. I did bits of housework yesterday, walked dog for half hour and that was me done in.
A consultant at pain clinic gave me pregabilin to take to try help me get some sleep - they just made me more depressed! I still wasnt sleeping but was like a zombie in the daytime.
I've gone from size ten to fourteen! Not such a bad thing for me as was too thin for my height but it's the drugs not the food I eat as barely eat! I can tolerate the pain mostly it's the inactivity n weariness that drives me nuts.
I hope you are having a good day today xxx
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Date: 16.01.2014
From: helen
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Subject: Re: In tears, pain & tired!!
Hello Willis. Had a lazy morning as it was along night awake and awful lower back pain. Trying to keep of diaxepam and oramoph I say that's always the last resort. I feel iv taken it too much lately. I don't want to rely on them for everyday meds. My Dr has really let me do what I think is best so that's good I can be trusted and think this way. As for weight I was a 14 now 18-20 but only 5ft3!! I always thought I was big at 14 so you can imagine how I feel. My face and neck is round from the steroids. I laugh when consultants say lose weight it will help the joints less pain. I just reply with I was never this size and still had this pain. They can see that by my notes as always weighed at every appt. Yes I'm sure I'm depressed but its enough to make anybody depressed. Iv nursed people in residential homes with this disease I look back how disfigured their hands feet knees they would complain of pain when getting dressed and would clunk and click and all they had was paracetamols. Bless them so yes we are lucky for our treatment&pain meds. God don't I go on. Anyway hope you have a good day.
Helen. Xx
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Date: 16.01.2014
From: willis
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Subject: Re: In tears, pain & tired!!
morning helen
s/son has oromorph not sure if he still taking it not seen him for a wee while but he says he hated it as although it sometimes took the edge off he wasn't 'on the planet'
he's had acupunture, leaches!! still the same
a nightmare illness you have
Go on as much as you want. that's what good about this forum, you can do that and there are others out there that feel the same and have some sort of understanding. everyone is different and has different symptoms or level of pain but still all feel the same - fed up at times!
hope you have a good day as best you can Karen how are you doing today? hugs to you
xxx
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Date: 18.01.2014
From: helen
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Subject: Re: In tears, pain & tired!!
Hello Willis. Thanks for your kind words. Its 2.50am iv been in bed since 4pm not even eaten just can't be bothered. Iv taken diaxepam and oramorph tonite but nothing my legs are on fire inside and my feet feel they have holes in the heals thru burning. My back is not easing up can manage about 5/10mins standing then I have to sit. Think Monday I'm gonna try and get into the drs. Trouble is my brilliant Dr left last April iv just been flitting from one to another I can't seem to connect with them. I can cry at anything but its not depression its pain and tiredness side effects off tablets.
No plans for the wkend have you? What part of the country are you from/living in. I'm down in Devon by the sea/countryside.wev had an awful lot of rain I'd rather have it cold but dry.
Iv just herd they found the body of the little boy and his mother has been arrested. How sad.
Have a good wkend.
Helen. Xx
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Date: 18.01.2014
From: karen
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Subject: Re: In tears, pain & tired!!
Hi Helen, Sorry to hear you are feeling horrid, I know what you mean about crying, I broke down at the gps & they offered me anti depressants, I said Im not depressed, Im just fed up!! Get well soon x
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Date: 18.01.2014
From: karen
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Subject: Re: In tears, pain & tired!!
Hi Willis How are you today? In answer to your previous question about the cold, I suffer with raynauds so I HATE the cold & cant go outside without my meds, saying that the cold doesnt seem to effect anything else Thankfully I am feeling well apart from a few pains, mostly upper arms...but I do a physical job so dont think that helps I see my consultant again in feb, I am waiting for a ena test, however I am confused by feeling well again! Take care, Karen
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Date: 18.01.2014
From: Willis
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Subject: Re: In tears, pain & tired!!
Hi ladies
Helen I'm from Scotland originally but live in lovely Essex now!
Oh the rotten horrible rain and what it's doing to south of country is just horrid to watch. Hmm doctors, my consultant told me go docs , they have to be involved in your illness - yeah n pigs still aren't flying! They sign off repeat prescriptions lol
Although, she was the one to direct me here to forum - people with same condition will know more than I do she said lol
Today I have been to town with daughter for a few hours - feet twice the size by time I got back. Karen I'm glad to hear you are feeling well again must be a relief for you. Is the ena test related to raynauds? I hope you are having as a good a weekend as possible and that pain subsides even a little for you Karen. Me and some of the other ladies I annoy :) use hot water bottles - have you given it a try or am I preaching to the converted :) Lots of hugs girls xxxx
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Date: 19.01.2014
From: karen
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Subject: Re: In tears, pain & tired!!
Hi Willis Well hello from across the river in Kent! lol The ena is to determine if I have any muscle damage as a blood test has indicated I have mixed connective tissue disease, i believe it can run alongside ra, although my ra isnt active....confusing! I havent used a hot water bottle yet but sure will try it when needed, thanks! Yes the horrid rain, theres a river that has burst its banks nearby & the poor peoples houses are flooded! Scotland is a beautiful place but I sure couldnt manage the cold weather there! Have a good weekend x
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Date: 20.01.2014
From: karen
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Subject: Re: In tears, pain & tired!!
To correct myself as told by the sec this morning, I am waiting on an emg not ena lol Anyone had this?
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Date: 21.01.2014
From: willis
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Subject: Re: In tears, pain & tired!!
Hi Karen and Helen How are you doing today? hope you are feeling even a little better. hugs to you
xxxx
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Date: 22.01.2014
From: John - There is Hope!
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Subject: Re: In tears, pain & tired!!
Hello Karen May I ask what Treatment you have been given for RA? allot of my info comes from the US and I was wondering how things might differ here?
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Date: 25.01.2014
From: karen
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Subject: Re: In tears, pain & tired!!
Hi John I was on methotrexate & hydroxychloroquine, I now only take hydroxy Where abouts are you?
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Date: 27.01.2014
From: helen
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Subject: Re: In tears, pain & tired!!
Hello Karen. How's things with you the past couple weeks? Have you got ur appt for your scan yet? Iv been and still am on sleeping tablets since last week. Started on half but now on full dosage they make me feel sleepy and nice to have a good night sleep. Trouble is as iv slept I don't move so morning pain is dreadful. Back pain is becoming a worry have suffered for over ten yrs every time it goes and I cannot move at all it eases but never goes back to how it was. Wondering whether iv got arthritis with it and some fibro pain. Cannot face going thru an MRI scanner ever again so I will never know.
From Helen. Xx
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Date: 29.01.2014
From: karen
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Subject: Re: In tears, pain & tired!!
Hi Helen Well Ive been a lot better than I was, but I do still have aches & pains but nothing to moan about, still waiting for my app! Sorry to hear you're still in pain, its very frustrating isnt it.....its catch 22 isnt it, your body needs the rest but the rest creates other problems, when are you back to see someone? Karen x
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