Not good today

[Koomaroo2]

Weather here is Gray and overcast,looking from my bed as always,hurt all over and feel yucky.Looking forward to chronic pain team on Monday my first appointment,hoping for a miracle and they can help me or I feel doomed😔 joined support group on fb it's overwhelmed me,all doom and gloom more than hope,it's made me question myself more to thinking I will never recover 😔 Joined a support group a few miles from home that hold once a month,took all my night to just get up and get dressed and getting there was so hard,they are supportive and welcoming but brain fog and pain stole most of the experience,so went by in a blur ,I need hope as I'm losing the will.Sorry to be on such a low but can't snap out of it.

[rosewine]

Don't apologise some days are just like that and everything gets on top of us and as you say the weather doesn't help.

Agree some of the Facebook groups are so negative. I used to go on a forum for pain and apart from one or two it was all soon and gloom and Unused to feel worse when I had come off than when I went on so decided to give it a miss.

I do hope the Pain Management can help with some good suggestions. They seem to vary so much in each area. I used to see a good pain specialist and have electro acupuncture but when he retired all his outreach clinics stopped. I now use part of my PIP money to pay privately.

Hopefully you will be able to get more out of your monthly meetings in the future. I am sure stress has alot to do with Fibro as all our muscles tense and when we are in alot of pain the fog descends. I am sure you will feel better at the next meeting.

Let us know how you get on tomorrow.x

[Koomaroo2 in reply to rosewine]

I don't think I could feel much lower than I feel now,I'm starting to forget who I was before,can't even look at photos of how I looked before all this happened to me back in January it's like iv aged 20 years.Yeah your right these groups are so negitve,and I feel like theses no hope that ill get any better just worse,I find myself offering words of support but can't support myself it's crazy .I can't stay on it my head just spins,I know they are all suffering like me and they send me comments of being there for me so that's really nice and I appreciate that so much,it's just I feel alone still and wonder more of the ones that can still function,so ask myself why can't that be me too.Yes I see that the pain clinic's vary in what they can offer and I can only hope what they can offer me can give me my life back as this is not me or my life.Yes hope next month ill get back to the support group because it helped being with others that are all in same boat but hopefully the fog at least stayed away on the day or I won't able to take in any one it's like your body's there but mind somewere else.I will let you know how I get on next week. Thanks for your message it's good to be able to talk about it all ,as you must find it hard too.x

[rosewine in reply to Koomaroo2]

Koomaroo2 If it is any consultation my first year with fibro was the worst. I felt the whole of my world was crumbling around me. My OH had s mental breakdown exactly a year before and had to give up his job he had done for 38 years and I had to fight at two tribunals over 2 years to get him the benefit he was entitled to. I too had to give up a job I loved and the pain and fatigue was indescribable. Slowly with medication, research on my part, referral after a very long wait to see the Pain specialist, rest,pacing etc my life slowly started to turn around.

I am now about 6 years later one if what I call the walking wounded. I have decided to balance some pain with a lower dose of one drug as otherwise it does make me very foggy. I don't think to pace myself (difficult at the moment as my OH has cancer) but it is a much better life than I had the first year or two. Some days are rough, winter the worst and I used to be a winter person and I have had to give up some things I loved but most of the time am in a better place. I hope the same goes for you. Thinking of you.x

[Koomaroo2 in reply to rosewine]

Hi rose wine,Thanks for your message,hearing all you've gone though and still go though bless you,yourself and OH 😔,I'm moaning about me! And you have had it far longer.Reading your message,has been a consolation to me and at the same time given me some hope that one day I will find that better place like you have found😊.I don't want my life like this,I want to live again,even do some things again I loved doing,gardening playing with my 4 yr old granddaughter and be able to help my grown up children be the mother they had before January that always supported them.And my husband his wife back.The one that walked beside him,not the one he has to push in a wheelchair Now,I could go on but you know what I mean it's like it's like some ones turned life off as I knew it.I don't know what comes after the pain clinic but I hope and pray it turns my life around so I can at least feel even just one bit improved.It would give me some hope I really need.Maybe I'm expecting to much.Thank you for thinking of me I truly appreciate it xx

[Janet28]

Hi Koomaroo2 I'm sorry your feeling so low my friend, it does get you a bit like that when you are in constant pain. Can I ask you if you take an antidepressant at all, maybe this would help improve your mood.

I think the weather plays a big part in how we feel, I know it does for me. It's half sunny & half cloudy here today but extremely windy.

It's good you are going to the pain clinic tomorrow, they do differ from area to area but the way they all work is similar & they can offer different treatments for pain. They tend to go with a more therapeutic/holistic treatment & can offer you, hydrotherapy, accupunture, CBT. They can also look at your medication & advice your gp if they think you may benefit from different meds. They can also give you injections which can sometimes help. Don't expect miracles though my friend, they can offer dietary information and gentle exercise classes, usually Pilates, I think run for about 6 wks.

I'm a bit like you, it's so much effort to get ready to go out, get there & back, it can be exhausting sometimes. Can't sit to long because of pain and the afternoon seminars they hold in our hospital for sleep advice etc. Would 've impossible for me to attend. They do have physio which can help a good deal. I do wish you luck & pls do let us know how it all goes.

Luv Jan xx

[Koomaroo2 in reply to Janet28]

Hi Jan,I take Zopiclone and Mirtazapine one of each at night to help me sleep,without I wouldn't sleep at all. I think I do need antidepressants as mentally I'm falling to pieces 😔 I have run out completely of energy mentally and physically,rarely leave my bed now life has come to a near stop.worn out.Pain and feeling so I'll no break.Even the weather is just the weather now rain or shine just goes over my head like I can't be bothered as I'm still laying here in the same hell. If read all your lovely message on the pain clinic somewere in there hopefully will be some sort of treatment they can offer me too,I have no other option don't know how I'm going to end up? It's scary and I don't know how I'm going to cope again or ever will.sorry to sound so depressed but this is my life as it is.And seems no way out.But yes I will let you know how I get on for sure jan thank you xx

[Janet28 in reply to Koomaroo2]

Awe bless you, that's awful my friend. Mirtazipine is an antidepressant, it is a fairly good one, I know it helps with anxiety but you may need a higher dose or even try a different one because it's clearly not working. Make sure you really tell the pain clinic how you are feeling. I'm very hopeful they can offer you more help than your getting now.

I know it probably doesn't feel like you will get better right now but you will, it just takes time to come to terms with it all, especially all the lifestyle changes, you will get there honey and we are here to support you so your not alone. I really hope you can get some relief very quickly. Xx🌻🌷🌻🌷🌻

[Koomaroo2 in reply to Janet28]

Hi Janet28.Yeah it's horrible it all is😔 iv taken the Mirtazapine for years prescribed to help me sleep as is the Zopiclone with no problems,Now I have these conditions I been given omeprazole and oramophine solution and pregabalin,the pregabalin doesn't help and makes me feel more ill so probably not right but I haven't taken them today I feel so bad already. I'm on the highest dose of Mirtazapine 45mg,I think now they all need to be just stoped and maybe give me different ones to try.Im going to really tell them when I go and how desperate I am,this isn't living it's existing! As good as bedridden and no apitite so lost over two stone since January 😔 I have a cyst on my thyroid gland in my throat which I was told wasn't cancerous or nothing nasty and wouldn't affect me at all.Wrong it's bigger and sore and stings constantly! They said was to risky to remove it,so we're does that leave Me! 😔😔 on one scan docs said it was only 6mm another scan and different doc said it was 10mm! What are you supposed to think,who do you listen to they all say something else,put that with the fibro osteoporosis Me and it's just more pain.Yep feels like I'm never going to get better just deterate futher. I will let you know how I get on..know I'm not alone and your all here for me.Thanm you so much.xx

[avocadopeardrops]

Koomaroo2

I have just been another forum and seen several postings from people taking anti depressants. Apparently the exact ones you are taking as well as opiates can make you feel the way that you are. I wondered what your dr would say about a medication review?

Hugs

[Koomaroo2 in reply to avocadopeardrops]

Really ! Thank you for looking into it for me😊,so kind and thoughtful of you! It's crazy because I'm just taking what iv been given so far,I'm not used to taking most of this medication,it's all bound to affect me in some way or another.Iv got pain clinic Tuesday and docs on the 15th so between them I'm hoping they can put some sort of plan together med wise,as I feel nothing's helping atm,mentally and physically,like you say they need to review what I have been taking,it's not good if so far I feel even more terrible.Thing is it's like they don't know how to help you at all,just through you box of pills and hope you don't go back.

Hugs back 🤗

[rosewine]

As avocadopeardrops rightly says some meds can make us feel more the antidepressant you are on didn't suit me at all and actually made me feel awful could barely function. Hope the reviews come up with some answers.x

[Koomaroo2 in reply to rosewine]

rose wine.Yeah I know I'm starting to know that,it's not good when you get told yeah it's ok to take that , yeah you can take that with other medication and it be fine,in some ways it's like I'm at there mercy all I want to do is get better and I'm not so you get to a point when you feel you could try anything to see if it helps.what was the one that made you feel worse? x

[rosewine in reply to Koomaroo2]

Mirtazapine was the one, in fact any antidepressant tablets have bad side effects on me. I take Zopiclone once or twice a week to get a bit of rest. Before I could have taken one tablet and have no side effects now if I take a whole one I feel very lethargic and hung over. I now split one but still have a muzzy head thee next day but not as bad.x

[Koomaroo2 in reply to rosewine]

Iv never had a problem with the Mirtazapine,Zopiclone helps me sleep I think it's the omeprazole and pregabalin that's causing me to feel worse.I know that muzzy feeling get it all the time .I guess we're all different,one day they'll find something that will make us all feel better I hope!!!!!x

[rosewine in reply to Koomaroo2]

Koomaroo2 Mirtazapine gave me a crushing sensation across my chest which felt as though I was having a heart attack and I felt a strange sort of breathlessness. Citalopram caused terrible fatigue and I was dashing to the loo all the time.

Of course everyone is different and what suits one doesn't suit another. Good luck with finding something that helps.x

[Greenpeace]

Hi there Koomaroo2 ,

I have been reading this post with interest.

The thing to keep in mind all the time, is that we all react differently to medication.

On this forum alone, there are members who take the recommended Fibro drugs i.e. Tramadol, Co-Codamol, Gabapentin, Lyrica, Amitriptyline, etc. without having any problems. Then there are others who cannot tolerate them in any way.

There are also people who can't or won't take conventional medicine, and those who use alternative medicines.

It takes a long time to work out, usually through trial and error, what works for you, and I see that your symptoms all started at the beginning of this year.

You're in a bad place just now, and the last thing that you need to hear right now is that you're feeling the way you do is because of your medication.

We are not Drs., and we can only speak from our own experiences. As I said " people react differently to medications ".

Take comfort and hope from the fact that you are going to the Pain Clinic on Tuesday. Try and have someone with you as it helps to have another pair of ears to remember what was said. Write down the things that you want to ask, and don't be afraid to speak out about your fears, and your feelings of hopelessness.

I will be thinking about you, and please remember it can take a bit of time to work out what works for you, but it can be done.

I'm sure you will let us know how you get on.

Good luck.

GP. 😊😊

[Koomaroo2 in reply to Greenpeace]

Hi Greenpeace. Yes it's got me thinking too,I am fully aware that not all medications work ,what might work for one may not another,it's so confusing!! All these names and alternatives! I can't take it all in at all.The very little medication I have doesn't help,bit it's all I have in this world at the moment to cling to😔I have so meany bad reactions to meany meds,last year before my illnesses were diagnosed there were only 2,Now theses a whole long list of can't haves.Yes all I can do is she what happens at pain team Tuesday,I'm going to do like you day write everything down and how I feel,my husband will be with me so glad because if the fog rolls in at least he can fill in the blanks for me.Thank you for thinking of me,and yes I know it's not a quick fix to all this and have to try and be possitve that things will get better for me.Yes for sure I'll let you know how I get on,i thought the illnesses were bad,but trying to understand it and how to get better is just as hard lol .

Thanks for luck GP I'm going to need l I can get 😊😊