first blog

[tinkerbell1]

Hi everyone!

Well im new to this site been on it for a week or so and i have replied to some of the blogs on here but never actually posted a blog so here goes...............

After starting pregabalin last thursday i feel like i have been steam rolled (if thats a good enough way to describe it) i am even more exhausted than normal in constant pain mainly in my chest neck head shoulder hands fingers and back but just when they subside slightly the pain moves to the lower half hips legs knees feet n toes the itching its driving me mad and all i wanna do is curl up and not come back for a long time! but i do come back as i have a daughter that needs me and i work but with my work im an advisor for tax credits and due to confusion slurring words forgetfullness etc its becoming unmanageable :O( my work is being supportive but trying to work with this is taking its toll but i dont want to give in either as im only 36 although i feel like a 90 year old. please tell me thisis normal these feelings im having? i cant talk to my mum (she has fibro) but she has other health issues and i dont want to dump my moans n troubles on her too im on pregabalin cocodamol citalopram ibprofen and they just seem to take the edge off the pain and thats it......is there anything else anyone can recommend? right thats enough moaning and groaning for my first blog but i know you guys will hopefully understand where im comming from rather than me getting "och your not that bad" from people who look at me and think because i look ok that im ok inside coz they dont understand........

gentle hugs xx

[LindseyMid]

Welcome tinkerbell!

Have you told you doctor about the side effects you're having? Always feed back to your doctor what's happening with new medications. The side effects may be normal, but some may be worth checking out and others may be possibly alleviated without stopping the medication (e.g. lowering your dose, taking it at a different time or even adding in another medication temporarily).

Finding the medications that will work for you can be a long process. However, we really stress the importance of getting not just an accurate diagnosis, but a comprehensive one. Many people with Fibro also have other things going on, even if these could be considered related symptoms, e.g. Myofascial Pain, or common comorbid conditions (conditions occurring alongside the main condition), such as hypermobility or Positional Cervical Cord Compression. But until you know exactly what is causing your symptoms, you can't target treatments.

Hope that makes sense. It's not easy to work out.

[tinkerbell1 in reply to LindseyMid]

it kind of makes sense! i only started taking the prgabalin 5 days ago so going to give it some time to settle if you know what i mean? i didnt realise that you can have other conditions along with fibro, do these make the pain worse and how do i go about getting an accurate comprehensive diagnosis? it was hard enough trying to get diagnosed with fibro :O( i suppose my mums right that i jsut need to live with it or learn to live with it as it doesnt go away i will give it a few days more and see how i feel and if im not any better then i will contact the doctors aand just ask for some advise

thanks for the reply x

[LindseyMid in reply to tinkerbell1]

It's really tricky as many things that can get missed are not often checked for. But it's mostly down to have the basic all been done and what symptoms do you have that are not typical of central Fibro (widespread unpredictable pain not related to localised joint or muscular issues, with hypersensitivity to pain and autonomic symptoms - e.g. poor temperature control, problems with low blood pressure or palpitations, etc) or what symptoms do you have that could indicate something else.

You can make sure you've had all the basic extras ruled out, so have had inflammatory, autoimmune and thyroid blood tests, etc. Vitamin and mineral deficiencies are often not checked for and should be, especially anaemia, B12 anaemia and vit D deficiency. If you have IBS symptoms, you should have seen a gastroenterologist to rule out other conditions like Crohns and Coeliac disease.

You will also be the best person to know if you have something that isn't typical of Fibro, such as swelling (which may indicate an inflammatory condition), photosensitivity (which can be a side effect of medications but is also a possible sign of Lupus), recurrent miscarriage or stroke (both possible consequences of Hughes Syndrome), etc.

Hypermobility is something you can check for yourself. See hypermobility.org/diagnosis...

Myofascial Pain is a common symptom with Fibro, but is a condition in its own right and needs its own treatments. It causes tight or knotty muscles with burning or shooting pains, muscular weakness, muscular restrictions (e.g can't stretch legs out properly when walking), headaches & migraines (especially frequent, chronic or intractable headache or migraine), etc.

Positional cervical cord compression is something that has come out of research in the last 10 years. See positionalcordcompression.c... for basic info. Symptoms and signs can include a positive Romberg test (see link below), pain in the dentists chair or when trying to get your hair washed at the hairdressers, etc.

en.wikipedia.org/wiki/Rombe...

It's not easy and it usually takes time to work this all out, but it's worth it.

Best wishes

[squidley]

Tinkerbell welcome to the site we are all a friendly lot on here. You go ahead and moan if you like, we all experience your pains and fustration at not being able to do the things we use to do. This disease has a lot to answer for it affects everyone in various way I myself have the same symptoms as you all I can suggest is that you pace yourself and get lots of rest and I send you gentle hugs also keep talking to your employer the more knowledge they have of this illness the more they will be able to help you. Take care and I look forward to seeing your blogs or questions xxo Violet

[tinkerbell1 in reply to squidley]

awww thanks violet i feel like all i do latelly is moan and groan the above are just a few and i suspect as many on here that if i were to put down every symptom id be here for an eternity as they can change hourly! today at work i had tingling up and down my spine and numb shoulder where my bra stap was sitting on my shoulder ( sat and sun i didnt wer a bra and although i still ahd tenderness and pain in my shoulders back neck and arms they werent as painfull as today and friday) this wasnt helped as it was radaiting up my neck and causing a headache too. walking today was painfull as my hips were sore and my left calf muscle felt has if it had cramped but locked and didnt ease up so regardless of wither i was sitting or standing it ached. oh there i go again oooooppppssssss. well im exhausted so im going to get off here and have an early nite and revell in the knowledge that i have a rest day tomorrow and still get paid!!! now thats a happy thought......

gentle hugs to you too annd again thanks xxoo

[Hidden]

Hello and a big welcome Tinkerbell! We are all in the same boat here, so if you need a shoulder to lean on, or just a bit of support, we're here to help. There's lots of info in Questions, Blogs and Tags.

Please complete your Profile when you have a moment, it helps us get to know you better. Just a bit of info about how long you've had Fibro, if you have any other conditions, a little about your life would be great. Looking forward to getting to know you!

[tinkerbell1 in reply to Hidden]

hey LbertyZ,

thanks for the welcome....yeah i have completed my profile i am quite new to fibro as i have only been diagnosed for nearly 2 wks but my mum and a few friend of mine have fibro so i can totally appreciate where they have been coming from especially my mum overthe last few years. i think i may have had this longer but as you are well aware its quite dificult to diagnose. i have read alot of the blogs on here already and i glad that it not just me coz even though i have heard of fibro sometimes i still think its in my head especially if i have a few good days in a row!

if i do need to do more on my profile let me know how and what i need to do and i will happily do so x

[Hidden in reply to tinkerbell1]

Hi Tinkerbell, your profile is just fine, many thanks!

It's good to have you with us, take care.

[hjones]

Hi tinkerbell1

this site is great, i spend so much time on here and always moaning and groaning about something!

i take gabapentin (similar to pregabalin), dihydrocodine, zapain, ibuprofen and i am currently on a course of steroids. i have been taking these for a good few weeks now but still trying to find exactly what works for me as i have trouble with sleeping.

i have found everyone on here positive and helpful and many people have made me feel a lot better about what we are all going through and making sure i know i am not alone.

hope you find it as helpful as i have

xx

[tinkerbell1 in reply to hjones]

hi,

i previously had been on gabipentin and had to withdraw gradually from it as was having really bad side effects from it so that took about 7 or 8 wks to do i had around 2wks when i was only taking cocodamol and ibuprofen and i really struggled especially being at work and then coming home and having to make tea etc since there ws no respite from the pain but i do have to get on with it all just takes it out of me although some days are worse than others and i do have good days and thats when i tend to over do it!! and suffer the next day or 2. im sure you all know this only to well i have taken dihydrocodine before but not for about 6yrs in was offered tramadol but dont take to them either (im more like my mum than i thought lol) but i havent heard of zapain do you find that these are helping you? i have days when i can sleep for britian and others when i get about 2 hrs sleep either way i dont feel like i have slept much or refreshed.

thanks for your reply and i hope your well

xx

[hjones in reply to tinkerbell1]

hi tinkerbell,

the zapain is pretty similar to kapake my gp said. they all do the same job but have different names.

i couldnt get through the day just on zapain but as i can only take 4 dihydrocodine max a day these help when i am having a very bad day and need a bit extra to help me keep on going.

i understand completely about working and running the home etc how much effort it takes, like you say there is no respite from the pain at all. even at bed time i suffer as i have problems sleeping due to pain and just a very bad body clock!

hope you find something that works for you

holly xx

[cobweb]

Hi Tinkerbell, welcome.

This is a terrific site but I admit that I'm not very good at remembering to log on very often!

I take pregablin although I'm not too sure whether it helps much. I had quite a few problems when I started taking it but am ok now. You sound like you're having quite a bad reaction so I really would check it out with your GP, you may even be able to do this over the phone , but whenever a medication causes such a reaction it's usually best to ask for advice.

Hope that you start to feel better soon.

Welcome hugs

Cobweb xx

[tinkerbell1 in reply to cobweb]

hi cobweb,

thanks for the welcome hugs and advice. I will give the pregabalin a few mor days and see if the way im feeling settles, to be honest i have lost confidence in my doctors as im sure that they were just thinking thaat i was putting it aall on....i knew it wasnt my underactive thyroid i was down but not depressed and my ibs had flared up but this was because the pain that i was feeling was stressing me out so this was not helpin the ibs. but if im still feeling as bad on friday then i will call and say to them. will probably be told its the fibro!! my doctors seem to blame everything once you have been labled with having something...and i dont mean that in a negative way its just the way they are. only one doctor in my surgery has been helpful but getting him is like winning the lottery

thank you gentle hugs being sent back to you xx

[Ginsing]

Morning Tinkerbell

So glad you have joined us this site is a brilliant way of talking to others in the same boat. Every one has given you lots of advice so for now- here is a cuddle do check with your doctor about any side effects that what they are there for - to help us Have a reasonable day looking forward to your blogs x gins

[tinkerbell1 in reply to Ginsing]

morning gins

it is relly nice to talk to people in the same boat as me was just telling one of my close friends about this site and even she ssaid that it sounded great! (my friend doesnt have fibro but shes always there for me we both unload on each other shes more like a sister than a friend lol) as i have said above i will call the docs but i will give it untill thursday as that will when i wilkl have been taking pregabalin for a week

hope your well

sending gentle hugs to you and everyone today as hugs always help x