The weather

We have sun here again today at the moment. I hope you get on ok with Rheum today and get your questions answered.

I hope you get your camper back so you can use it again soon.

I am ok went shopping yesterday with Molly and Claire. Molly had day off school due to the election.

Going to try and catch up on some jobs today as been out so much over the last couple of weeks with one thing and another lol. :lol:

Take care everyone!

Love Tess x x

Miserable weather here today, showers and dull I certainly hope, Lizzy that last week wasn`t summer, when the sun shines I feel so much better! Hope everything goes ok at clinic today, and you get the answers you need. Its so hard when we can`t get the information that we need and that is our right to have access to.

Managed to get the things done that I had on my `list` yesterday and today, but think I get afraid now that I`ll do too much and not realise it and then end up in the middle of another flare up. I feel so confused by everything and never sure what to do to be right :!:

Bet you enjoyed shopping with Molly and Clare, Tess :D Well going to cook dinner now take care all.

Love Linda

Its hard to know quite how much to do. I have had a few really busy weeks with lots of travel and finally caught up with me this week. Last few days been feeling really tired. :cry: Was good to go shopping with Molly and bought her some new trainers as she needed some to practice her sports day today. Also got sophie a little white pair of shoes with bows on that she fit her up to a year old. Too big at the moment but she will grow into them. They are like little party shoes.

Went also to get myself something to wear for a Evening Wedding Reception next Saturday. My nephew is getting married and we were invited to church etc but Stewart working and couldn't get anyone to cover for him. So going to the evening reception instead. Managed to get a top but was looking for a skirt or dress. Tried lots of dresses on but none of them looked right. I have got a nice three quarter black evening type dress I wore for the Weddings I went to last year so might wear that.

Hope you are ok Lizzy.

Love Tess x x

Hope you are all well?

Tess did Molly enjoy her practise sports day? My youngest daughter did her practise sports day friday. She came third in the 1500m. I'm glad you enjoyed your shopping trip. I hope you are not feeling so tired today.

Linda I hope you didn't do too much? So you find that doing a lot is the cause of a flare? I also hope that wasn't summer too. Plenty of rain all last night and most of today.

My Rheumi appt was not a great success. The consultant is convinced it is fibro and not a Lupus flare. She thinks the overactive thyroid triggered it in Aug 2007. I got the impression that she didn't believe me that 10mg a night of amitriptyline had made me hyperactive and unable to sleep. So she wasn't very keen to try anything else. In the end she agreed to 25mg a night of dosulepin but didn't hold out much hope for it. Her idea for a way forward was CBT but I have already been turned down for that as I'm not a suitable candidate she was a little surprised at that, but then she said mental health patients always get priority.(is anxiety & depression not mental health) Basicly she told me exercise and rest. I have a follow up appointment in 8 months time. Thats quite usual for Lupus.

Had my first physio appt. after rheumi appt. that was interesting they will show me some stretching exercises as on the whole I am fit.

I admire you ladies as you seem to handle all this very well. I thought Lupus was hard to live with but this is even worse so many parts of the body involved. I have an idea of what makes me worse and it doesn't seem to be exercise it seems to be the anxiety. If it was just a matter of changing my lifestyle I would do that but I have no control over family stresses unless I find a way of dealing with them, I can see improvement being a long way off.

So do you all see rheumi for your fibro or does anyone see a nuerologist. Or are you all under the care of your Gps? Once its diagnosed I take it, its all self management. Do you get regular check ups or do you just see your Gp when your'e not well?

Well after a day at the hospital my hubby decided to treat us to something nice. A new bed he thought it would help us both. Ours is 15 years old and was very cheap when we bought it. Doesn't time go quickly.

Anyway its got pocket springs and memory foam so I am looking forward to my first nights sleep on it. It better be good as we used all our savings.

Wishing you all a good day tomorrow.

Lizzy

Molly did enjoy her practise sports day. The real one is on 7th July in the afternoon. :lol:

I only saw the rheum twice. First apt got diagnosis and on the second could see I was coping ok with help of tablets from gp so discharged me.

Don't go for regular check ups. See gp when not feeling too good. I have to see him this week sometime as message on my repeat prescription to go and see gp. Need to check that ampytripline is ok, also my thyroxine and ibs tabs. Going to try get appt on Friday as he is only in on Thurs and Fridays.

I hope you have a good night sleep on your new bed. We need a new mattress for our bed as have had ours a long while. Our bed is ok as Stewart made it and it is a four poster.

My legs are really hurting tonight so feel we have some more rain on the way lol. :cry:

Take care

Love Tess x x

I only saw Rheum once as well, she discharged me back into care of GP. I guess I`m lucky as my GP is good, don`t have regular chek-ups though just see him when I feel I need to. He certainly seems to think doing too much can trigger things, he`s always telling me I must learn to pace myself :!: lol That`s what I thought I was doing, but apparently not :!: Trouble is I don`t seem to be able to tell until I`ve done too much and some symptom or other kicks in. My biggest problem is the chronic fatigue, some days just making a bed knocks me for six, and by early evening I`ve always had it :!: I can feel fine and decide to go to Tesco or whatever and suddenly, without any warning I`m exausted and feel I just can`t do any more. Then just have to rest. I hate it :!: :!:

Lizzy must be awful having Lupus as well, however do you cope :?: I have underactive thyroid, which can account for some of the tiredness, so am wondering if overactive thyroid mught account for you being hyper :!:

Glad Molly enjoyed practice sports day, used to love all those things when I worked in school :!: Still really miss it

Di, haven`t heard from you for a while, hope you are ok and John too has he had his test yet :?:

Well, sun has come out now after some awful rain.

Love Linda

Did you say The Sun WHERE? I have considered becoming a Swan.

Part of the problem is I haven't coped as my Gp has not been very helpful and rheumi just kept sending me for tests and not saying much. So I am on a mission to get my life back on track. I've never let the lupus get me in a mess so I am now determined to get my life back. I ment it when I said the fibro is worse than the Lupus.

May I ask what you mean by trigger things,what things? I'm trying to sort out what is Lupus and what is fibro.

[b:8f30b96b53]Lupus[/b:8f30b96b53]

The fibro tiredness is identical to the Lupus tiredness so I have always assumed that was Lupus. (Tiredness triggers my depression) Linda you described the tiredness perfectly.

Ok do your hands swell when you do housework and then become painful to use?

Intolerence to medications.

Unxplained rashes

Wheezing at times.

Stiff joints in the mornings.

Overactive thyroid

Sun sensative.

Lots of weight loss (too quickly not dieting)

[b:8f30b96b53]Fibro[/b:8f30b96b53]

The aching muscles I put down to anxiety as they seem worse when I'm stressed.(excersise doesn't seem a problem)

The IB and bladder I also put down to stress?

The constant headache I put down to fibro as never had that before? What causes the headache?

Not been able to think clearly, memory loss, unable to multi task like I use to. Concentration poor. (part of stress i think)

Dizziness.

If anyone would like to move anyting from the Lupus to Fibro please say as I would love to know. Or add something I have missed.

So do I take it that not many people work when they have firo then?

Tess hope the real sports day gets some nice weather. A four poster bed I am envious now. So romantic. Will let you know how the first nights sleep goes. It comes at the end of next week. Can't believe I'm getting so excited over a bed.

What does occupational health do in a hospital?

Hope everyone else is well?

Take care all.

Lizzy

We had some lovely rain too. Was out doing my weeding when started to rain lol. :cry: Did have raincoat on so kept top half dry and put hood up but kept getting in the way and couldn't see what I was doing lol. Worse was to come when it chucked it down and bottom half got wet then and had to give in. Did get quite a bit done. The rain at least made the ground soft for weeds to come out. :lol: Sun came out for while this afternoon and then another heavy shower.

Lizzy I would be excited as well about a new bed or mattress as it will probably improove your sleep if you don't sleep well. Its Stewart's last night and so glad. Keep waking up about 3 oclock and 5 oclock for some reason when he is on nights. I use to have stiff joints first thing in the morning before doing my exercises. :lol: Although they are always worse during the winter. :cry:

If I were you I would really try and find another gp who will understand what you are going through. I know you say Fibro is worse but you have two conditions to deal with. I think you do really well to cope with it all. :lol:

Yes Di hope you are ok like Linda said and has John had his test yet.

Also Lindy how are you have you been busy with work.

Ses how are you doing!

Love Tess x x

I was abducted by aliens.... :lol: sorry Ive not been around of late. Been so busy with work and Ive been going over to see my brother quite frequently.

Weather has taken a turn here also. Been sunny over the weekend, but very cool. I read in the paper yesterday that they had SNOW in Aviemore. Kiddies playing in their paddling pools at the start of the week, and building snowmen on the Friday! Could only happen in Scotland.

I hope this wee message finds everyone well.

Catch up soon.

Lindy..x

Good to hear from you. :lol: Thought you was probably busy with work with time of year. :cry: Do hope your brother is doing ok. We have some sun here at the moment but think it might change later.

Take care

Love Tess x x

Hope everyone else is doing ok today!

When I was diagnosed my GP printed out the patient uk information leaflet, this list of symptoms is taken from there:-

What are the symptoms of fibromyalgia?

The main symptoms are pains felt in many areas of the body, and tiredness. Some people also develop other symptoms. The severity of symptoms varies from person to person.

Pain

Pain can occur in any area of the body. Typically, many areas of the body are affected, and some people feel the pain 'all over'. The neck and back are the sites that are often the most painful. The severity of the pain can vary from day to day. The pains may be made worse by stress, cold or activity. After a night's sleep, you may also feel quite 'stiff' for a few hours. Many areas of the body may also be quite tender.

Tiredness

Tiredness (fatigue) is common, and is sometimes severe. In some cases it is more distressing than the pain. It is also common to have a poor sleep pattern. You may wake feeling exhausted. Many people feel worst first thing in the morning, but improve by the afternoon. Even a small amount of activity may make you tired. The tiredness may cause you to have poor concentration.

Various other symptoms have been reported by people with fibromyalgia. Also, there are a number of other conditions that often occur at the same time as fibromyalgia. As a consequence, quite a number of other symptoms may occur in people with fibromyalgia. The following are perhaps the most common, but it is not an exhaustive list of every possible symptom that may occur:

Headaches are common.

Irritable bladder is common - you may need to go to the toilet more frequently than usual.[

Irritable bowel syndrome occurs commonly in people with fibromyalgia - with abdominal pains, sometimes with diarrhoea, constipation or bloating.

About 1 in 5 people with fibromyalgia also have restless legs syndrome (see separate leaflet called 'Restless Legs Syndrome' for more detail).

Painful periods occur in some women with fibromyalgia.

Pins and needles in fingers and/or toes.

Some people describe a feeling as if their hands or feet are swollen (although they are not actually swollen).

Depression or anxiety develop in some people. It is not clear whether these are part of 'fibromyalgia syndrome', or develop as a result of having this condition.

Some people with fibromyalgia also have CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis).

I think its safe to say that I experience all of those except painful periods, too old :!: Lol Not always all of them at the same time, but it has happened :!:

I know nothing about Lupus I`m afraid, but had a quick look at the patient uk info leaflet and there does seem to be more symptoms that can actually be diagnosed with a test of some sort. I think the main thing about Fibro is that they run loads of tests, but they come back normal. When everything else has been ruled out then a diagnosis of Fibro is looked at. Its one of the things that lost of people find hard to understand, the fact that all tests are normal, and some of us therefore think we are not being believed and that its all in the mind :!: It most certainly is not :!: I often think this especially when I`m having a good patch but then things change and I know there`s something wrong with me. Strange eh :?:

well must go, taking Ray to a meeting for people with sight problems, this afternoon, not sure what to expect, so watch this space.

Love Linda

oh my god u wont believe my fortnight thats why i have not been on

dont know if i said i have fell 2 weeks ago hurt my ankles went to hospital and they said my achilles were stretched thats why i was in pain..

but...... last sat.. i was coming down my stairs and i got a sudden pain in my chest,couldnt breathe, cold sweat and blue lips.. john called a ambulance right away..so

the story is.. been in hospital all week just got out last night......got a huge blood clot in the main atery to the lungs... i was minutes away from death i have been told.. clot still there but on blood thinner drugs(warfrin) had injections loads of tests, so they now think i had a dvt in my left calf from where i fell.... im so scared as docs keep telling me they have never heard anyone surive the size of clot i have got.... so as u can imagine everyone at home is on tender hooks...

a friend came to visit today and guess what...... she smoked right beside me the whole time she was in.. im to nice to say anything but can u believe that.....

anyway not had much time to read all ur posts but hope ur all well..love di xx

Poor you, you must be absolutely terrified :!: Why do so many things always happen to one person and some get away with nothing and live a life of peace and harmony :?: John must be worried sick, especially with his own health issues What happens next, can they give a clot buster drug like they did Ray when he had his heart attack :?: I know they can only give it once and then a certain length of time before they can give another. Well thinking of you and your family, get on and chat whenever you can we are all here for you.

Love Linda

Oh Di how scary for you. Good job John rang ambulance straight away. Good to hear you are doing ok now. Some smokers are very rude and don't think about anyone else. Like you I would be to polite to say anything. Although we are very lucky if we ever have a party or barbecue at our house the smokers go outside with out us even asking. :lol:

Look after yourself and take care.

Big hug for you!

Love Tess x x

I hope you are feeling a little better today. It sounds like you had a very frightening experience. I wish you a speedy recovery. I hope John has recovered from the ordeal too.

Some smokers can be very insensative at times. My brother has lived with us for the last 8 months and he has been very good smoked outside in all weather.

Take care of yourself.

Wishing everyone a great day.

Lizzy