thought i would start a fresh page

Bones, joints and muscles
1

well what can i say, i have cried most of the day to my husband telling him i cant go on in such pain, when im like this i cant do anything i lie on couch and feel i am a zombie(with really bad pains) just watching the world go by, ses says she runs about after her 2 year old, how u do it pal u must be in agony. i crawled up my stairs today to go to the toilet and it got me thinking how the dla think that u dont need help.. i think i need to contact my doc again my meds arent workin my friend is on slow realease morphine so surely they could try something like that for us... im sorry if i sound a bit down but i dont mind being disabled but i do mind being in constant pain like im punished.

hope u all are feeling better today and i just hope one day they find something before there is more people giving up x

2

Hi Di,

I know how you feel, I often have felt like that, I felt like I had no future with my new husband, it was't until I saw the Pain Consltant that I got help that my outlook changed, he gave me meds and listened to me and that was the start in learning to cope with the pain and fatigue, learning to pace oneself and knowing that the pain is there due to the Fibro and not something else so I have learned to put up with it now instead of worrying why I got pains.............You seriously need to contact your GP, surely he can give you something to take off the edge, my meds don't work fully, I am in pain 24/7 and when my hip goes or my back I struggle more with my little one which is so disheartening as he often wants to play and mummy cant so I get him a book or something and he sits next me pleased he can see the pictures. smile Is there a support group too near where you live as you may get some tips on coping, I know it is easier said than done but it is all we can do :oops: Today I cant bend forward as my back and hip is severe, and the pain is across my shoulders going to both hips, I walk with a limp so getting up and down stairs is troublesome.

You may be able to get financial help in making your home more easier to get around as there is all sorts of grants you maybe able to receive? obviously subject to status as they say!

You may be feeling your pain more enhanced as you are at a difficult time now, as stress highlights us fibroites somewhat intensely, stress goes hand in hand with it and you need to try some \"me time\" if you can? I know you have done card making but just listening to music with head phones on can relax you, I do this when I am stressed out as you are in your own world for those minutes you listen........ I hope this helps you? There are also helplines for us Fibromyalgia sufferers. if google FMA UK you may be able to chat to someone independently xxx

Take care x

:rose:

3

Hi Di

Ses is right about the stress it does make it worse. It does help if you can find a bit of time for you with something to take your mind of the pain for a while. So sorry to hear you are feeling really low. Until you can find a support group we are both here for you to talk to. Don't keep your feelings in write them down. Don't think there is a support group near me but I find it helps to talk to you both. I have more aches and pains today with this horrible weather and hoping to go away on the 17th for a few days to my niece wedding.

I come on the site most days when I am at home so if you feeling down just drop a line.

Hope things look brighter for you soon and you get the help you need.

Best Wishes

Jane

4

Hi Ses

I think when you have a little one to look after you seem to find that extra strength from somewhere for them. Even when you are not feeling to well you do it because they need you to if you can. I had a bad headache yesterday and just wanted to sit and rest. But had my grand daughter to look after she wanted me to play cards with her so did help take my mind of headache. Luckily it was a sitting down game. Later in the day was wearing my apron and she piut the strings round the chair and tied me to chair lol. :D She has been learning to cross the strings into bows ready for school. Didn't realise until she said nanny stand up and couldn't. Luckily she hadn't done it too tight!

I do hope you get to your Wedding and the weather will be ok. We have a Wedding on Saturday too. It is just and evening invitation so shouldn't be too bad. My granddaughter is going to be a bridesmaid so am looking forward to it.

Rang about my physio appointment yesterday and still not got letter from my surgery. Rang surgery as doctor not in until Thursday and couldn't see a letter on my file. My xrays and blood results are back so going to have to make another appointment with him. Think I going to ask about something to help with sleeping. The lack of sleep is not helping the headaches!

Hope you get some relief from you pain soon!

Best wishes

Jane

5

Hi there Di & Jane,

I used to be on amitriptiline to help with sleep and it is suppose to help the pain but I had some reaction with my asthma I was ok on the mild ones but as it didn't help really ( as we are all different ) the doctor increased the dosage and then I had breathing difficulties :oops: so I came off them.......I do think my little one does keep me going as it is a case of having to !!!!

Support groups are in the midlands area, I hope I am right the area you live Jane x lol ( not very good in Geography )......

Support groups :-

Burton-on-Trent and Swadlincote, Black Country, Grantham, Nene Valley (Northampton), Glossopdale ( Derbyshire) group, Coventry, Derby, Shrewsbury, Walsall and Nottingham & East Midlands Fibromyalgia Support Group.

There is also help lines in your area with FMA UK......

Help lines

Hereford & Worcester, Leamington Spa, Tamworth, Stamford, and Spalding.

There is support groups as far as Scotland too ( I am hoping I am right Di sometime ago we chatted I may be dreaming x lol).......

Suport groups:-

Aberdeen, Angus & Mearns (Montrose), Dundee, Elgin, Falkirk, Cupar (Fife), Glasgow, Inverclyde (including Dunoon, Largs, Paisley), Livingston and Port William.

and there is a helpline in Edinburgh.

I hope this helps as I am having my second group meeting next week and it is so good chatting to someone that knows how you feel smile and it is good us chatting too on here xx

Take care and I hope you both are having a better day xxxx

I couldnt sleep last night I have no idea why but I was wide awake with pain, again something I just put up with as it is all I can do :oops: :cheerup: :rose: :cheerup: :rose:

6

Hi Ses & Di

No my area is nearer to stamford. So the helpline for stamford would be nearest for me.

Thanks anyway for listing the areas for me.

Hope you are feeling not too bad today. If you got children your right you do have to keep going.

Hope things will get better for you Di and you get help you need. Keep positive if you can!

Love Jane

7

Hi there Jane & Di x

It is so hard some days, and so when I am having a bad day, after tea-time I look forward to the little one going to bed :oops: makes me feel so guilty, so much harder when I am at my worse, I do get help however my girls help and I do get him in nursery twice a week for rest bite due to my condition :? I just wish I could have more happier quality time without feeling stressed due to the pain????

I hoped I helped you both with the support group in your area, I set mine up because there is no other groups near xx another thing that keeps me going when I am having a bad day as focusing on something takes your mind off the pain somehow even though the pain is 24/7 :oops:

I do hope you both are ok today and I do hope you start feeling a bit positive Di even though it is easier for me to say xxxxx

Take care xxxxxxxx :love: :rose: :love: :rose:

8

Hi Ses & Di

You shouldn't feel guilty as it is really difficult when you not feeeling so well. I am lucky that I only have my grandaughter from 12 until about 6 so I do get a break. Although I have to collect her from nursery but luckily I can walk it as it is only five minutes away. When my husband is not on shift he collects her for me. How old are your girls. I have five children but only one 19 year old daughter now at home. My daughter having another little girl in September.

Not been very good day with this horrible damp weather. Going to see dr tomorrow for some results. Pretty sure my iron levels are still not right.

See if I can get appointment tomorrow. Have to ring on the day and sometimes difficult to get him as he is only in on Thursday and friday. Don't want to see a different one to much hard work!

Hope you feeling ok Di and this weather not getting you down too much.

Hope you ok to Ses and take care.

Jane x x

9

Hi there Jane and Di x

Melissa is 15 (16 in March), Olivia is 10 (11 in September) and Ethan is 3 in January :oops: so I have a on the spot babysitter if need be :lol: the girls argue though and they can stress me though :oops:

Not had a good day either the pain has been so bad in my spine and hip, and pain going into my left leg, into the knee and ankle, so painful, yeah due to this dreadful dreary weather :evil:

My doctor left last week so I am so upset as now I have to see another doctor, the point is the practice owner is not worth seeing as he offers you co-codamol before you see him and my doc that I had actually got the ball rolling as he sent me for x-rays which showed I had degenerative discs and arthritis in my hip and because of the discs I had to see a pain specialist, the first Pain specialist (Registrar) was a patronizing sowing so and thankfully as I refused to see him again I got to see the pain specialist consultant that knew about \"fibromyalgia\" I am now in a dilemma as I do not ever want to see the practice owner at my surgery and so I will probably just have repeat prescriptions as he is not worth seeing.......... and then there is the fact if there is a new doctor to be registered at the surgery I will have to explain my situation :oops:

My left arm is so painful typing this now and the pain in my left shoulder is excruciating to I am going to have to say ta ta for now and I hope you both are felling better than me xx :tennis: :wink:

Take care xx and keep smiling as that is all we can do xxxxx :lol:

10

Hi Ses and Di

Thanks for taking time to reply to me with your pains in your arms. Good to hear from you. My children are Amy 27, Andrew 26, Claire 22 (23 aug), Steph and Chris twins 19 (20) sept. Got my two daughters who haved moved out live near by. Steph is still at home when not at her boyfriends. Chris home at the moment but back at Uni in Preston in Sept.

Andrew lives and works in Cambridge with his fiancee. Cambridge from us only about hour and half away. So I have help about if I need it too.

It must be awful with your doctor leaving and you then have to find someone else. Not very easy! Don't know what I would do if my doctor left the surgery. Don;t like seeing a different one just for one day if I can help it would rather wait unless emergency. Hope you get sorted with another doctor if you can find one soon.

Hope things improve with your pain.

Keep well both of you. Di hope you are ok as not heard from you for a while.

Love Jane x x

11

Hi Ses and Di

Not a very happy person today sad . Tried for 40 minutes just to get through to the surgery and then for them to tell me my doctor had no appointments left. Tried at half eight as soon as they were opened. He has been on holiday and shouldn't be so popular! Got to do the whole thing over again tomorrow. Got up early purposely to get ringing at 8.30.

Was offered another doctor but said no as waste of time going to see another doctor. Rather wait to see my own. If don't get to see him tomorrow will have to wait for a couple of weeks as we are away on the next two thurs and fridays when he is in. Will just ask for him to ring and speak to him on telephone.

Sorry about the moan but just had to get it off my chest. Not had rain yet here so pains aren't too bad at the moment.

Hope you are both not feeling too bad. Keep positive. Take one small step each day and go from there. Have to take my own advice as well!

Speak soon

Love Theresa x x

12

HI there Theresa/Jane??? Di

I have been feeling like poo poo too and I have got my phone call for my rep to present me for my appeal so I am dreading this appeal..... I think this makes me up tight too!!!!!! I am aching from head to toe and I have a bad headache.... I woke up at 6pm this morning as I was in pain flipping nightmare....... the pain is getting worse too as it is nerve pain everywhere and my fingers are effected by this same as yesterday but totally warn out!!! I did go back to bed and got up at 12.15 pm all I want to do is sleep but I can't!

I cannot understand why your doctors surgery didn't make you an appointment there and then for the next day even? No good for us fibro sufferers having to wait longer....... I do not know what I am going to do as I have to see a \"new\" doctor :oops:

I hope you get your appointment tomorow xxx and I hope you are both having a better day xxxxx :smooch:

Take care xx

13

Hi Ses

Sorry you are being in so much pain. Hope things improve for your soon.

I use my middle name Jane on here. But my first name is Theresa so you can you whichever you want. Just used Jane Amy as they are my middle names. Hope I have not confused you to much.

We are not allowed to make appointment for the next day. We have to ring on the day we need an appointment. My son even tried to get an appointment today with any doctor and none available. Don't no whats going on lately as was much better system than we have now.

Hope to get one tomorrow but got dental appointment at 10.10 so will have to see what time they give me. If need be will have to cancel dental appointment as want to see the doctor more. It will be another two weeks if no. Rang the dentist to let them know and I can ring and cancel them on the day. Didn't want to be charged for missing a dental appointment on top of everything else.

Well hope you get things sorted out for you soon. Must be painful for you to type with fingers. Thanks for getting back to me.

Best Wishes

Theresa Jane smile

14

Hi Theresa and Di

I hope you get your appointment tomorrow Tess (for short ,hope that is ok?)

I am feeling so drained and going to got bed..... I am typing one handed now lol :oops:

I hope you are ok too Di? as we haven't heard from you...........anyway keep smiling and I hope you both have a better day tomorrow I am off to bed sweet dreams xxxx :fairy:

15

Hi Ses & Di

Thanks ses so do I. Be ranting again tomorrow if not lol! Tess is fine.

Get a good sleep (thats a laugh) try anyway. Hope you ok Di1

Talk soon

Theresa x x

16

Hi Ses & Di

How are you both feeling today. We have that lovely rain not sad tonight again. Been dry though during the day.

Well did manage go get doctor appointment for today at 11 that worked well with my dental appointment so was able to go to both. Didn't enjoy sitting in waiting rooms. Got on well with my doctor I was his last appointment so had even more time with him. Ask how I was feeling and for no reason I can think of started to cry. Couldn't really understand where it came from as didn't really go in feeling sorry for myself. I think sometimes I do try and put on a brave front at times.

He said I could have my physio at our doctors surgery that will be really good as won't have to travel to Peterborough. It is about 8 miles away from where we live. Not too far but if you only have about 20 mins with physio it wil be more travelling time. Plus I don't drive so got to rely on husband and family members to take me. I can get there myself if I need to as in walking distance if not too tired. Walked one way back today. It is only about a mile.

Also gave me some tablets to try to help me feel better. They are 29mg Fluoxetine capsules. Have you tried them and are they ok. Lots of side effects on leaflet so always a little bit worried about taking new tablets.

Got to go back and see him in a month before tablets run out.

Never got to find out about my xrays as he had to download from another file so will be getting in touch about those.

How has your day been ses have you had some relief in your hands and hips today. smile

I hope you are ok Di. smile

Take care both of you.

Theresa x x

17

hi jane and ses

sorry i aint been on..school holidays here in edinburgh, my kids are chris 21 greig 16 and kerri 14 so u would think i had it easy lol.. but teenagers are hard work to lol... still not heard from hosp yet, but my occupational theripst was out last week and what a great help they are..nicola sorted out a electric recliner chair for me which is fab..(when i can get on it lol) it also goes forward to make it easier to stand up.. my greig has taken to it so its a fight to who has it first lol... she also gave me a food trolley a stool and a handy gripper... i sometimes feel about 90 with all my aids but they are very helpful. so ask ur docs to be referred it is really worth it girls... its the weekend again eh and the weather hear isnt good again.. my husband is working this weekend so i have to take the kids to there football training... its the sitting waiting 3 hours that makes me so ill... keep popping the pain killers though... hope ur all ok and thanks again for keeping in touch xxx

18

Hi Di and Ses

Thanks not too bad had worse sleep than normal last night. So still trying to get my head together at mo. Don't worry about all the aids you have as long as they are working for you. I am lucky I don't need anything like that at the moment but we can never say never can we. If it makes fibro easier to deal with then so be it! I do know I cannot wear shoes with heals very well now and that can be annoying. Just a silly little trivial thing to moan about.

I hope you hear from the hospital soon. Was this to see the rheum? I have Wedding to go to tonight so will have to try and pace myself today and not do too much lol! I know what you mean about teenagers it is sometimes harder. I only have my twins who are 19 at home now. Chris is going back to uni in September and Steph is looking for somewhere to move in with her boyfriend near to where we live.

Hope you are ok Ses has didn't hear from you yesterday. I know it is difficult for you to type if you hands are hurting so much.

Both have a good weekend with a little less pain for us all!

Love Jane/Theresa

p.s. Di Jane is my middle name so you an use either of the above. Sorry to confuse matters! :shock:

19

Hi there Tess and Di,

I have been in so much pain it has been a nightmare..... every joint in my body felt as through it had been trapped in a door or something and yesterday was the wedding of my sister and it went ok but by seven o' clock I felt like I had been in a boxing ring or something, the pain was unbearable, I was sat there feeling sorry for myself as there was people a lot older than me laughing and dancing doing the time warp and other party dances and there was me sat like a 90 year old (I am 35) :cry: so glad it is over now!!!!

Anyway the sun is out and I am feeling slightly better, I do hope you both are having a better time than I have had :cheerup:

Take care and gentle hugs to you both xxxxx :hug: :rose: :hug: :rose:

20

Hi Ses & Di

Like you I went to an evening wedding reception. The pain wasn't so bad for me in the evening it was more the tiredness. Like you I feel a lot older than I am with this stupid thing. I am 52 but sometimes feel like eighty. Its not very nice when you are out and feel that way. We should be looking forward to going to weddings and other occasions. I wake up in the morning and think what have I got to do today and feel as it is a big mountain to climb sometimes. I was able to a little bit of dancing nothing to energetic though. My granddaughter wanted me to dance with her so hadn't the heart to say no. Obviously if I couldn't then I would have to say no but she is good and would understand.

Just lately she has been asking me if I am happy today. Think she knows some days I am not my usual self.

My worse time for pain is first thing in the morning and last thing at night.

It is bearable during the day if I keep myself busy.

As your pain got worse over the years or has it stayed the same.

Gentle hugs back to you. Keep going!

Hope you are not in too much pain too Di and you coped with the waiting at the football at the weekend.

Take care both. smile

Theresa