Thank Goodness

[nh_user_13459]

After just over 2 long years, my GP thinks I have FMS. I have a Rheumatologist appointment next week. Certainly the symptoms fit me like a glove, the problem has been that I have Stills Disease which can also have similar symptoms.

I have felt as though I have been a nuisance trailing to and fro the GP with a variety of symptoms. My pain is now tolerable thanks to Naproxen, Amitryptiline and my usual antidepressant. I have had severe depression for almost 6 years. The thing I find hardest to cope with is the dibilitating fatigue which is almost a constant thing. Since starting the Amitryptiline I have been sleeping much better, but I still wake up feeling exhausted.

I am 47 but feel about 90 most days. I have found reading some of the threads on this forum very useful and feel that I am not so alone with this weird and wonderful selection of symptoms. It seems that most people have a battle to get a diagnosis for FMS. It will be an enormous relief to have a positive diagnosis at last.

[anon87974465]

Hi Win

I am Tess and have been diagnosed with fms for about two years nearly. It took me about eight years with going backwards and forwards to the doctors.

Even one doctor wrote in my notes that I was obssessed with my joints. It took to seeing another dr at the same practice and he was the one who finally listened and has been really good ever since. The other doctor in question said about my joints as I have OA as well. I would be going with different symptoms but no one made the connection. I would go with irritable bowel, irritable bladder, feeling tired and not sleeping well. All the clues were there but not being put together. I was referred to rheum and like you I had all the symptoms in the booklet before they even felt for the pressure pointed.

With having eleven of the pressure points they finally said I had fibromyaglia.

This site has been a real positive thing for me and for the others that have been on here. i am sure you will probably get Lizzy and Linda come on at some point. We all talk to each other on here. Not only about the problems with fibro but other topics as well.

I hope your appointment with the Rheum goes ok next week and you get the answers you are looking for. It is a relief when you finally have a name to all the aches and pains that are going on.

Come on again soon and let us know how you got on.

Tess

[nh_user_4268]

Hi Win

I'm Lizzy and I am pleased to meet you. You say you have stills disease so I can understand the problems it has caused for a diagnosis of fibro, I have the same problem with Lupus and as of yet they are not 100% sure that its fibro.

I hope your appt goes well and look forward to chatting to you.

Take care.

Lizzy

[nh_user_5010]

Hi Win,

I`m Linda and have had fibro for several years now, and I also find the fatigue the most difficult thing to cope with. I take amitrityline as well as my usual anti depressant and find it does help, up to a point! Trouble is I`m either so exhausted, despite sleeping all night and half the day as well, or, like last night I`m awake most of the night so am still exhausted! Just can`t seem to win.

I wish you all the best with coping with this miserable condition and look forward to chatting again soon

Linda

[nh_user_13459]

Thank You Girls

The total exhaustion is really getting me down, my house looks like a bomb site and I keep loosing things in the dust lol! Today, I am really exhausted and my fingers feel like sausages and so stiff. My OH tries to be helpful but he is so undomesticated and goes the long way around everything and as for his cooking skills, best not to go there lol

I am 47 and have 3 grown up children and 2 small step-children, I was a social worker until I could no longer cope with my job and caring for my late husband. I remarried at Christmas and things are pretty good. I have been having CBT for my depression and it does seem to help quite a lot.

Rightly or wrongly I have high hopes of FMS being confirmed by the Consultant, at least then I shan't feel such a fraud.

Nice to meet you all

[nh_user_13459]

Thank You Girls

The total exhaustion is really getting me down, my house looks like a bomb site and I keep loosing things in the dust lol! Today, I am really exhausted and my fingers feel like sausages and so stiff. My OH tries to be helpful but he is so undomesticated and goes the long way around everything and as for his cooking skills, best not to go there lol

I am 47 and have 3 grown up children and 2 small step-children, I was a social worker until I could no longer cope with my job and caring for my late husband. I remarried at Christmas and things are pretty good. I have been having CBT for my depression and it does seem to help quite a lot.

Rightly or wrongly I have high hopes of FMS being confirmed by the Consultant, at least then I shan't feel such a fraud.

Nice to meet you all

[nh_user_4268]

Hi Win

I'm 44 and will be 45 next month. I have 4 children, 20, 17, 15 and 13 years.

You are very lucky to have CBT my rheumi wanted me to have CBT, but I was turned down at point of referral without even having any kind of assessment. Due to me being so ill for the last 3 years and my rheumi insisting I wasn't having a lupus flare I couldn't cope so my hubby ended up running a very busy household, trouble at schools and his job.Things got really bad and he ended up getting the sack. So now we are both at home and hardly any money.

I find Tess and Linda are great to talk to especailly as I don't like to offload on my hubby too much. So if you want just join in.

You shouldn't feel like a fraud, its so hard to explain to anyone how life is when you feel total exhausted and all these strange going ons with your body. To look at me I look the picture of health in fact blooming has been mentioned, oh how i wish i was.

I always get told at appointments that I don't pace myself properly and that I would feel much better if I did.

I take antidepressants douselpin (same group as amitryptiline)maximum dose at night, normacol for IBs, planequine for SLE, lansoperazole for heartburn and paracetamol as I am not allowed ibuprofen. I am also waiting for a Vit D injection and then hopefully that will keep my calcium level up.

Take care.

Lizzy

[nh_user_13459]

Hi Folk

Sorry about the double posting yesterday not sure why that happened.

Starting today I have a busy weekend, and pacing myself is almost impossible. I have to pick up my Step-Children from school 22 miles away, get some shopping and prepare and cook tea. Hopefully I can take it a bit easier tomorrow. But with a 7 & 8 year old around I know it will be hard especially since I find the increased noise hard to cope with.

It has been a revelation reading the threads on here, and I feel as though a weight has been lifted off my shoulders. Just knowing that there are other people with the same symptoms has made a tremendous difference to me. I feel as though I am a spectator of life and not a participant and I am hoping that I can pickup some tips on how to get myself back into living again.

As I have already mentioned, now the pain is under control, the most frustrating thing is the fatigue. How do you folk pace yourself? and what little tricks have you picked up? I would love to know as I seem to sleep for at least 15 hours a day and feel like a wet rag the rest of the time.

The other thing that I find hard to cope with is my lack of balance, I fall around like a drunk, which is really embarassing when I am out. I know people look at me which tends to make me worse. There are days when I just can't face going out.

Sorry to moan on, but I am hoping you lovely people may have some tips that might help me.

xx

[nh_user_4268]

Hi Win

To be quite honest with you this pacing thing just goes out the door when family are involved. It wasn't until a few weeks ago that the concept was properly explained to me. I thought doing jobs in the morning and resting in the afternoon was what I called pacing myself. It would seem that, that is not the case. Apparently you break the jobs up into short periods and spread them throughout the day. You should also try and do them when you don't feel up to them and don't do more when you feel ok.

As for sleep I've not really worked that one out at all, as Lupus can causes chronic fatigue as well so its like a double whammy. I do walk 3 miles 5 days a week, this helps with the stiffness and my general well being to a point.

As for noise come about 8pm I have had enough of the noise created by my family and I go to bed.

I have found a fairly cheap hobby (geocacheing) for Alan and I to do, in the hope that it will take my mind off the illness and to try and help me move forward and enjoy life again. So far we are both enjoying the hobby but I am finding that it wipes me out for a few days after.

I'm sure Tess and Linda will give you some tips on how they cope.

Take care

Lizzy

[nh_user_3760]

Hi Win

It is good to see you still coming on and talking to us girls. It is difficult to pace yourself. I am 54 and not got any children at home now. I have children of 28, 27, 24 and twins 21. Although they are not at home it still takes time to visit them all and help with their problems etc. I also have to lovely granddaughters as well. I look after Sophie who is 18 months on a Tuesday most weeks.

Saying that the thing that does help me to unwind is when we go away in our motor home during my husband Stewart's rest days off work. It is good to get away from it all and chill out. But there is always another problem that comes along. I try and pace myself but always end up doing to much and paying for it later. I am trying to get my thyroid levels right as well and having to keep getting them checked.

I know what you mean about being told you have fibro as you feel as if you are wasting the doctors time when you don't know whats going on.

I think you should just take one day at a time and get use to the idea of having fibro. Saying that I still have not got my sleep problem sorted after two years being diagnosed. I get terrible leg pains overnight and early morning.

It is really good to have this site though to get it all off our chest!

Keep coming on for support!

Tess

[nh_user_13459]

Hi Girls

I'd just writen an essay and thought I'd posted it but it seems to have disappeared into the ether :lol:

I ended up in hospital this weekend as my face swelled up really badly and was very hot and tender. I was sick several times on Sunday but sent home to continue the elephant sized doses of antibiotics that they had started on the Saturday. An infection of the lymph glands was the conclusion. My pain which had been managable escalated and I feel really rotten.

Pacing seems to be a tricky subject and everyone has a view on it. I try to spend 10 minutes or so every half hour doing something. Inevitably I seem to run out of steam though and end up falling down.

I have heard of geocacheing Lizzy but have no Idea what it is, haven't liked to show my ignorance :lol:

I enjoy gardening and crafting, and I try to do something every day. We grow all our fruit and veg in amongst the shrubs and flowers. I have tomato's and strawberrys in hanging baskets and potato's in purpose made containers on the patio. I also like to knit, sew, cross stitch, cardmaking and scrapbooking. I'm not a great fan of tv and watch very little, I do enjoy reading but find that sometimes when my concentration is really rubbish that I have to reread everything over and over, which is really annoying.

I sold my little Bedford Bambi motorhome last year. But now the sun is shining I really miss her. We loved to go to Caravan Club sites where there was nothing but a tap and a waste disposal point. Often even at peak season we would be the only people on the site.........Bliss!

Thank you for taking the time out to 'talk'to me I feel so much less misunderstood and lonely and I really look forward to getting to know you all better.

xx

[nh_user_5010]

Hi, Win, Tess and Lizzy,

Felt absolute rubbish since Thurs evening Have the severe pain in my back which I`ve not had since was first diagnosed, am bloated from the Irritable bowel and exhausted, which goes without saying. I`m even finding it hard to sit and type :!: So GP for me in morning :!:

Win, have you been told that the balance and falling is due to the Fibro :?: I`m due to see GP this week for results from Nureology Department tests to find out why I lose balance as they didn`t think it was due to fibro :!: So watch this space.

Hope you are both ok Tess and Lizzy, afraid I`m too sore to sit here any longer will catch up again later

Linda

[anon87974465]

Hi Linda, Lizzy & Win

Linda I hope your back gets better soon and you get on alright at the doctors tomorrow. Its not very nice when you feel bloated with the irritable bowel. It is really uncomfortable. :cry:

I have just been on the other one of the forum \"the waiting game\". Lizzy left message on there as well.

Win and Linda do you want to talk on \"the waiting game\" or stay on here and we can all be on the same one.

Win I hope you are doing ok today.

Lizzy just replied to you on the other one lol!

Tess

[nh_user_4268]

Hi Win

Oh dear that does sound bad, I hope the tablets kick in soon. Geochaching is a hide and seek game around the world. People hide boxes all over the place and you find them with GPs co-ordinates. I haven't done any reading for ages as I am unable to concentrate long enough. I like your gardening ideas. Our last holiday for a week was on a field with only a tap and chemical point. They have been some of our best holidays. People also tend to keep away from us after a few days as we camp in a tent and washing doesn't come very high up on the list when its a tap only site.

Linda Oh I am sorry to hear you have not been too good, hope all goes well at the docs in the morning.

I too also had balance problems, but a course of tablets for vertigo helped.

Take care

Lizzy

[nh_user_5122]

hello tess,win,, and lizzy wow i remembered your names, go me,,lol.

i have had cervical spondylosis for the past 20 yrs almost and have had assorted treatments,, for pain,, anxiety, sleep and thought that is all it was, then more and more new symptoms popped up.

my extreme sweating,, yuk. new pain spots?? lack of memory and concentration,, which i put down to my thyroid. which i recently found out that fibro is connected to both thyroid and diabetes sufferer's.

i was under a neuro for my cs, i have seen a few,,lol. i had mri's cat scan's, and blood tests, all to no avail. i went to see my neuro in march and he put me on new meds,, i didnt know what they were but took them anyway,, i had to go back after three months to see how i was going. i didnt know what i was taking them for as they are anti-depressants and i am already taking some??.

anyway i thought i would check,, he told me he had by the process of elimination diagnosed me as having fibro the last time i saw him.i was to say the least gob smacked,,lol.

i am now seeing a physio for a frozen shoulder, then when that is sorted(hopefully) i am to be seen for my fibro. this is more help than i have had for the past 20 yrs and i dont feel as if i am losing it any more,,lol

i didnt know there was fibro pain,, specific to us,, i thought it was just oa.

it is an eye opener and it is all thanks to a junior dr that was at our practise and he reffered me after my asking could it be fibro,, ( i sometimes know more than is good for me,,lol)

any way ladies and fellow sufferer's i am away to bed not to sleep as you will all know but to rest and wait until i am tired enough,, which could be 4am or so even though i take sleeping tabs.

night and pleasant dreams and i hope not too many awake in the morning in the pain i do..... chris

[nh_user_6573]

Hi Chris

I understand where you are coming from as I too have cerv. spon., disabetes, underactive thyroid and OA.

I have been getting increasing more pains which I know are different from normal (if that is possible) to OA.

The things which are differrent are - pain and stiffness in the soft tissue at my hip and buttocks. Pains in my wrists and feet. Shoulders and upper forearms ache and are sore to touch. Most of the time my skin on my back and other areas are sore and sensitive and I can't bear my clothes on them. My neck is sore and I have a pain which goes right up and over to the top of my right eye. Some mornings I am so stiff I can't get out of bed. I also get occasional bouts of diahorreria and I have also had bladder problems.

I have never connected all these things and my doctor has never mentioned any connection.

Most days I feel so sore and absolute rubbish and then sometimes I can feel a bit better but tenI overdo things and, well, you all know what!!

Everything I have read regarding FM symptons have started to ring bells. I know it sounds really wrong to wish you had something but to know would make sense.

I don't know how to approach my doctor without sounding as though I am trying to tell her her job. She has taken bloods because she said polymyalgia was a poss. but apparently that was clear.

Any advce would be welcome.

Sally

[nh_user_5122]

hi sally,, from what i know of the condition,, getting normal results is all part of the search for the outcome..

i have had it for over 20yrs now and i was so relieved to get my diagnosis about 6months ago.

if you ask your gp there is a support group in most health authorities,, mine had a 6week course to teach us how to deal with it and to meet people with the same problems so we have peer support.

good luck with your daughter i hope you get the result you hope for.