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[Maggiefloss]

Hello, I was diagnosed with Fibromyalgia just two weeks ago. I cannot see my GP for another 5 days so I haven't started any medication. The worst symptom for me is CFS and of course lack of sleep. I think I will need to learn how to manage this. Has anyone any hints or tips as to how best to cope with this and any medication which has yielded results? I get exercise as I walk my dog twice a day but it is sometimes very difficult to get going in the morning. As I went out yesterday it has taken me until 2pm to 'regain any level of consciousness'. Are there any support groups in Warwickshire/West Midlands?

[Janet28]

Hi Maggiefloss welcome to to forum ☺ I'm sorry you have the diagnosis of Fibro & it's very stressful waiting for gp app.I surpose it takes that long for them to inform your gp of diagnosis but I thought they were the ones that inform your gp of medication they think you should take. So maybe you could give surgery a call & ask if they have done that & if so, can they give you a prescription now before your appointment because your in pain etc. Just a thought.

Peace, luv n light

Jan x

[Maggiefloss in reply to Janet28]

Hello Jan, Thanks for your response. I have had copy of the letter from the Consultant to my GP and he told me to get an appointment when that came through. He did recommend several drugs and I have sent an email to a pharmacist friend to get the gen on them. He was principal at a large hospital and more knowledgeable about drugs than a lot of doctors. My GP practice will not prescribe anything without a consultation so I have to wait for Friday. In the meantime I am reading up on things.

[rosewine]

Hi welcome to the forum. Yes getting our heads around this illness is causing difficult. Sometimes by the time we get going in the day you feel the day is over. Have you had the chance to have a look at our mother site Fibromyalgia Action UK as there are alot of tips on mds and pacing etc combined with alternative help such as hydrotherapy, acupuncture etc.

I think Pregablin has helped me most with the fibro symptoms sometimes difficult as I have osteo and other illnesses as well to ay what drugs are helping what. I found hydrotherapy the best, some physio exercises have had helped with mobility and I am trying acupuncture at the moment.

If you look on the mother site there is a link to ask whether there is any known fibro support groups. I know there was a support group in Halesowen but unfortunately I was unable to attend as it clashes with something I do. Look forward to your future posts.x

[Maggiefloss]

Thank you rosewine, I am currently reading up on anything I can about Fibromyalgia, excepting American sites. Unfortunately Halesowen is about 30 miles from me, but I will keep looking.

I have had acupuncture for a spinal problem and it was brilliant but it doesn't work for everyone I know.

I am getting very frustrated, because although I am not particularly houseproud I am living in a permanent (dusty) muddle at the moment and I live alone so I am just having to put up with it.

I may feel better when I have some meds and they have kicked in, fingers crossed.

[Janet28 in reply to Maggiefloss]

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[Steve49]

Hi.

Welcome to the team !!!

Sorry about your meds, can't you see your GP earlier than 5 days ???

Yes managing your condition is a bigggie.

Yes keeping active is a good idea.

I have to plan everything like a "Military Plan" nowadays.

Yes please ask me for any help ???

I live in the West Midlands.

Do you want me to find out if there is any groups in my area ???

Steve.

[Maggiefloss in reply to Steve49]

Hello Steve, thank you for your reply. I have sent an email to see if there is a group near to where I live, not far from Coventry but actually in Warwickshire.

Sadly, Friday is the earliest available appointment. That is good, it is usually a fortnight. I suspect that like many GP practices they have too many patients!

I have a chalk board on my kitchen wall which I am writing everything down on and I find writing things down helps me not to think about them too much. If I write them down I can stop stressing about them but as I said its the fatigue and the frustration of not being able to do what I used to that is the wost thing for me.

[Steve49 in reply to Maggiefloss]

Hi.

No probs.

Do you want me to check for you ???

I live in Birmingham currently.

I was brought up in Warwickshire.

Yes I know the area quite well.

Aren't you able to phone first thing & get a urgent appointment ???

Yes GP's are under big pressure nowadays.

That's a good idea with the board.

Stress isn't good at all, I keep out off it's way totally.

There are two components that increase Pain in me:

1. Physical.

2. Stress.

Yes it is very difficult to think off what it was like beforehand.

I found it better in looking forward not backwards.

Unfortunately we can't change what has happened, but we can change the future.

Steve.

[stargirl47]

Hi maggieflossand welcome to the gang we are not a bad bunch as it goes, there is always someone ready to listen or to give advice or even if you just want to vent as we all do at times , and there is always someone online at all hours 24/7 as a lot of us suffer with sleep depravation so we are on here all through the night aswell as all day , sorry cant help you with the ssupport groups I live in coventry but iv never looked into it maybe something I should do . Well once again welcome a pain free sleep filled night is wished your way

Hugs sarah xx

[Maggiefloss in reply to stargirl47]

Thank you Sarah, I could do with the sleep. Unfortunately I get so tired, I can't focus on the screen! Its good just to know you are not alone. Thanks

[Maggiefloss]

Thank you for your reply. I saw a lovely man at the Priory hospital in Birmingham and he explained that the meds may take a while to get right so I can't wait to get started.

[BlueMermaid3]

Hi Maggiefloss

Welcome to the forum I am sorry to hear that you have been diagnosed with Fibromyalgia.

With regard to Support Groups if you have a look at our mother site you will find a list of groups on there fmauk.org

As to medications, your GP should have a good idea as to what to try you on to start with.

Everything with Fibro is a learning curve. Medications are very much trial and error. We can tell you what works for us, but at the end of the day it may not work for you.

It is a great idea to learn as much as you can about Fibro. You will find our members extremely knowledgeable and if there is anything specific you'd like to ask please post away.

There are various things that your GP can refer you for. Some of these are Pain Management Clinics, physio, Cognitive Behavioural Therapy to name a few.

However, I would say that your priority at the moment should be to take some time out to try to come to terms with your diagnosis.

Unfortunately you cannot rush the process as much as you want to (and I do understand why you want to).

If you try more than one new med at a time you will not know what is working for you and what is giving you side effects.

Our mother site is full of useful information, so you may find that this is a good starting point.

I look forward to chatting with you again.

Wishing you less pain and more peace

Lu x

Administrator

[Maggiefloss in reply to BlueMermaid3]

Hello and thank you for your reply. I have a copy of the letter the Consultant has sent to my GP and he mentions several different meds. I have also contacted a friend who is a retired pharmacist to get the gen on the various things the consultant has recommended. I am reading what I can but my capacity to absorb information is a little impaired at the moment.

As for coming to terms with the diagnosis, I have been living with the condition for some years and it has become part of my life. I thought it was just something I had to put up with until I got the diagnosis so in a way it has been a relief to know there could be something to help.

The worse thing is the frustration of not being able to do the things I used to. I am finding it difficult to live in a messy house and as there is no one else to do it, I shall have to get used to it - or find a cleaner!

Maggie

[peck]

Magiefloss, Hi, and welcome to our forum, hope you enjoy it!! Sorry to hear of your diagnosis. I do think once you have seen a dr that can give you necessary meds things should get better.I wish you the best.Peck 🐤

[Maggiefloss]

Thank you. I have to say I do hope some medication will help but we shall have to wait and see.

[albinohedgehog]

Heya, welcome, wishing you some relief soon. I also find the CFS the most debilitating thing, and have diagnosis of both fibro and CFS, although i dont know if they are actually seperate things. I find cocodemol with 30mg codeine helpful. I also take a magnesium and a b12 supplement and these have helped pain and energy. The best thing is pacing though for me, and sticking to my 'spoons'. You may know about it already but the spoon theory by Christine Miserando is helpful for pacing and explaining fatigue to others. Try to get as much suport and help as you can - eg. your doctor, CAB, perhaps a support worker, counselling if you can. Sorry if others have already suggested these things, am too tired to read all replies atm.

Wishing you lots of good days,

Hedgehog xx

[Maggiefloss in reply to albinohedgehog]

Thank you for your reply. I take Tramadol for a spinal problem so I don't really want to try anything else at the moment, I will just see how it goes with the GP. I had not heard of the spoon theory so that is interesting and I will look at it, I feel I need some advice on pacing myself. I am happy to get any advice anyone wants to give me. As I am retired, I am not sure what help I may get. but I will see what the GP says. Its a pain to have to wait, but I don't think you can rush these things

[TheAuthor]

Hi Maggiefloss

Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you are suffering and struggling at the moment and I want to sincerely wish you all the best of luck. I am also so genuinely sorry to read that you have a spinal problem as well. Please take care of yourself.

I sincerely hope that you manage to find a suitable Fibro group.

All my hopes and dreams for you

Ken

[Maggiefloss]

Hello Ken. I am feeling a little better today because I didn't do any anything yesterday. I'm about to walk Daisy my little Labradoodle. I find it difficult to get out, but better when I have managed it. Luckily Daisy loves to chase a ball so I don't have to walk far, I can sit on a bench and throw the ball. I don't know how other people feel, but sometimes just an amble round the garden lifts the spirit.