New member Newly diagnosed uk

[xxcazzyxx]

Good morning all. I'll apologise now as I think my first post here is going to be a long one. Just so grateful I've found this place and reading through I'm not alone.

I was diagnosed with fibro a month ago. Surprisingly it only took 2 months for my dr to diagnose. What I didn't realise and had not joined the dots as my dr did through my medical records. I been suffering for years with migraines, last year I got sent for mri brain scans as my face was numb and I literally lost words, I got confused in mid conversations. I've felt continuously tired. I also had x Ray's a while back on my leg as it got so sore.

About 4 months ago and the only way I can explain it, it was like my body had a migraine. My hips, legs, well from foot to neck hurt. So that's how I got my diagnosis. Before this I was very active, one hour walks in evening and 4 days at gym. I feel like I've had my life robbed from me. I currently work full time, although my boss has been great and I work from home when I cannot move for the pain. Which I'm lucky if i can get into work once a week. I'm waiting for an appointment from a specialist fibro pain clinic, dr has given me amytriptolyn and codeine phosphate. The amytriptolyn is good at knocking me out so I'm now getting a solid 3 hours sleep before I wake up with the pain that bolts through my body.

I think right now my problem is with people. I use a crutch to walk with as it seems to hurt so much more in my right leg, and my pelvic area. The crutch helps me to walk upright and in turn alleviates some of the pain in my hip and pelvic area. These past few weeks I cannot walk far and its getting worse each day, I'm terrified it's going to get even more. Not sure how I'll cope with that. Anyways I managed to get in work yesterday, and a colleague see me walking into work. He then later said, oh look at you, woe me and hobbling! I basically told him to do one, but it really affected me, he then proceeded to say, i know someone with fibro and they didn't get diagnosed that quickly. And they dont need a stick. Just pain killers. Believe me it wasnt quick, i just didn't go to work and fill them in with every ailment and complaint i went to my drs with. I know I shouldn't let it, but how quick I've gone down hill for past month. To think people think I want to walk with a crutch to get a woe me is beyond me. Anyways I will get used to peoples attitudes I suppose.

I am new to all this as i hadnt heard of fibromyalgia. I'm trying to research as much as possible.

I suppose my question is, does it get better, am I going to get worse than this, will I need my crutch forever. Does this pain ever stop. I broke down last night to my partner. Told him I didn't want sympathy. But not sure how long mentally I can plant this fake smile on my face and say, oh well I'll be ok. It's not ok. I blinkin hurt. And I'm petrified the way it's going and seems to be getting worse, will It plateau out. Or end up needing a wheelchair. It just seems relentless, and I'm so so tired.

I would like to say thank you if you got this far. And sorry it was so long. I guess I needed that vent.

 

[fimi]

Hi Cazzy and welcome!

I think right now my problem is with people. I use a crutch to walk with as it seems to hurt so much more in my right leg, and my pelvic area. The crutch helps me to walk upright and in turn alleviates some of the pain in my hip and pelvic area. These past few weeks I cannot walk far and its getting worse each day, I'm terrified it's going to get even more. Not sure how I'll cope with that. Anyways I managed to get in work yesterday, and a colleague see me walking into work. He then later said, oh look at you, woe me and hobbling! I basically told him to do one, but it really affected me, he then proceeded to say, i know someone with fibro and they didn't get diagnosed that quickly. And they dont need a stick. Just pain killers

There's a difference between not undersatanding an illness and being judgemental, and this man is definitely being the latter. If he knows so much about fibro then he should know it can affect us all differently - so basically all he's doing is showing himself up. You're doing the right thing by keeping away from negative people like this - I've had to do the same through my own life for the sake of my health.

I suppose my question is, does it get better, am I going to get worse than this, will I need my crutch forever. Does this pain ever stop.

There really is no definite answer to this. But some fibromites have and do lead very fulfilling lives by keeping up the self care. You will no doubt receive further posts after mine on indepth self care to help - some of which you may not have tried - and lots of further support from fellow sufferers to go with it.

I would just say this ... if you need to use a walking aid - then use one. You're the one with the illness, and you need to do everything you can to help yourself gain a better quality of life. And I know it's not easy, but please try to ignore energy zapping people who will only bring you down. You have a partner and you now have us lovely lot! So vent away all you need...you'll probably be supporting others too when they do it - we all need let off steam from time to time.

Be honest to yourself and your partner - you have fibro, but you can work with it and have a good life. You may have to make a few sacrifices, but from my own experience it's made me a calmer and happier person by doing so. And there's usually other ways of doing things.

I'm considering getting a walking stick myself - one I can fold up and put in my bag just in case. I often feel I need one, whether for pain or fogginess and balance - or all of them! ... and I can look as if I don't need one a lot of the time too. But if people want to ask me about it - I welcome that! The negative judgers, as you say - can do one!!!

Hope that helps cazzy - stay strong

 

[xxcazzyxx]

Thank you so much fimi. I think I was probably looking for some kind of approval that it was ok for me to get angry/upset over this individual. When I came home I thought, did I over react just because I was over tired? But I shouldn't have to put up with people like that. Reading through forums is actually very comforting. I guess as I'm new to all this I will eventually find my coping measures. Everyone is such an inspiration. I think it's the not knowing that is messing with my head at moment. Doctor said this could be just a flare up. It's the not knowing if this is it forever, or if it's going to get worse, or is this it, and it's a flare up and maybe in a few weeks /months I'll feel half normal again. I guess over time I will probably deal with this so much better. I have the weekend free so I'm going to read through this forums and educate/learn all I can.

If I'm being very honest with myself and everyone here, these past few weeks I've only been trying to get my head around this all. And not much else. 2 weeks ago I had a really good day, where I felt a bit energised, so I tried to clean house from top to bottom, that was a massive learning curve for me, ended up in bed for 2 days I wont be doing that again.

It's all a learning curve at moment. As for the stick, definitely give it a go if you feel it would help. My doctor suggested it to me as she could see the excess pressure I was putting on my hip while trying to alleviate the pain from my leg. It helps so much, I dont leave home without it now I've even named it polly

I look forward to interacting with you all.

 

[fimi]

You're welcome cazzy
You've got me thinking of names for my stick now!!

 

[cookiebaker]

Hi Cazzy, and welcome!
I can certainly empathize - i use a cane when I am out and about... dont use it much at home because there is always something to grab hold of if i need it - table, chairs, kitchen counter, etc.. Not so easy when out and about..

dr has given me amytriptolyn and codeine phosphate

I am going to suggest you use the codeine as little as possible for a couple of reasons.. 1, it is highly addictive and over time you will need higher and higher doses to get the same effect, and 2, it really is not really going to do that much for you. sure, it might take the edge off a little, but it wont kill the pain completely.

....and they didn't get diagnosed that quickly and they dont need a stick. Just pain killers

If you have been with the same doctor for a long time, it is not really all that surprising to get a dx reasonably quickly - but i guess the question is this - if you have been suffering with migraines and other issues for a long time - was it really that quick?
Also, fibromyalgia affects everyone differently.. yes, we all have similarities - such as the wide spread muscle/tendon pain & fatigue, but none of us are affected exactly the same, which is why this is so frustrating at times.

I feel like I've had my life robbed from me.

this is a very common feeling, and in a way, it is true.
While we may not be able to do everything we used to do, with good self care, pacing, and a bit of time, we find we can do a lot, but we have to be aware of our limitations and learn/know when to back off...
Learning to pace ourselves is a BIG step in learning to cope with fibro. You have already learned that one the hard way, by trying to clean the whole house on a day you felt pretty good.. Next time you feel good, maybe try one room, or even one task of cleaning one room.. dont think you have to do everything in one go.. taking frequent breaks is important, especially on those good days.
Not sure if you have ever heard of the "spoon theory" - or the one that folks here like better - the "battery analogy" but they are useful tools in explaining things to others.. the battery one especially - it seems to be more relatable to more people. (look up "battery analogy for chronic illness" to learn more)

I, personally, am coping with both fibro and osteoarthritis (severe in places) - my hands, low back/pelvis and neck are the worst.. and I am in the middle of a major arthritis flare right now after a fall a couple of weeks ago.. and in turn, that causes the fibro to flare up as well.. my knees are probably the worst for that.. not the joint itself, but the muscles & tendons around the knee is what hurts the most.
As for pacing.. it recently took me two days, with help, to complete a project that would normally take 4-6 hours - that is pacing..

 

[sunkacola]

Greetings @xxcazzyxx . I agree with the above posts, especially the cautions about codeine, which is highly addictive. You don't want to add physical addiction to your problems, so go very very easy on that and do not take it daily.

I also want to mention that of course you can be angry at what that person or any other person says to you, and it is understandable. But you are not going to change anything with that anger or resentment and it will definitely cause you harm because stress exacerbates fibromyalgia. The initial scene is stressful and you cannot stop that from happening. but the sooner you can let it go the better for your own sake. Carrying that anger is very bad for the physical health of people with fibro.

There may always be people who make fun of you or don't believe or offer worthless advice. I bet all of us on this forum have experienced that. What we need to do is develop a thick skin, or a sense of humor about it, and just stop caring about what those people say or think. This is self-defense.

You ask if it will get worse, will it ever get better, and does the pain ever stop. You probably know that no one can answer this for you with genuine authority because everyone is different. However, there are tried and true things that you can start right now to do for yourself that have a high probability of making things better for you. I talk about that in my advice post, linked below. I wrote this because I started out where you are and am in a far better place now and leading a life that, while not anywhere near the standards of my life before fibro, is at least a normal I can fully accept. I can do the things I need or want to do if I go about managing the fibro in the right way. Note: the Right Way is different for each individual, but my post will get you started.

Ask questions, we will try to answer. Ask for our experiences, we will write about them, ask for support and you have it. This is a place where people help each other as best we can and anyone being deliberately unhelpful or unpleasant is not permitted to stay. You are not alone.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[xxcazzyxx]

Hi Cazzy, and welcome!
I can certainly empathize - i use a cane when I am out and about... dont use it much at home because there is always something to grab hold of if i need it - table, chairs, kitchen counter, etc.. Not so easy when out and about..


I am going to suggest you use the codeine as little as possible for a couple of reasons.. 1, it is highly addictive and over time you will need higher and higher doses to get the same effect, and 2, it really is not really going to do that much for you. sure, it might take the edge off a little, but it wont kill the pain completely.


If you have been with the same doctor for a long time, it is not really all that surprising to get a dx reasonably quickly - but i guess the question is this - if you have been suffering with migraines and other issues for a long time - was it really that quick?
Also, fibromyalgia affects everyone differently.. yes, we all have similarities - such as the wide spread muscle/tendon pain & fatigue, but none of us are affected exactly the same, which is why this is so frustrating at times.


this is a very common feeling, and in a way, it is true.
While we may not be able to do everything we used to do, with good self care, pacing, and a bit of time, we find we can do a lot, but we have to be aware of our limitations and learn/know when to back off...
Learning to pace ourselves is a BIG step in learning to cope with fibro. You have already learned that one the hard way, by trying to clean the whole house on a day you felt pretty good.. Next time you feel good, maybe try one room, or even one task of cleaning one room.. dont think you have to do everything in one go.. taking frequent breaks is important, especially on those good days.
Not sure if you have ever heard of the "spoon theory" - or the one that folks here like better - the "battery analogy" but they are useful tools in explaining things to others.. the battery one especially - it seems to be more relatable to more people. (look up "battery analogy for chronic illness" to learn more)

I, personally, am coping with both fibro and osteoarthritis (severe in places) - my hands, low back/pelvis and neck are the worst.. and I am in the middle of a major arthritis flare right now after a fall a couple of weeks ago.. and in turn, that causes the fibro to flare up as well.. my knees are probably the worst for that.. not the joint itself, but the muscles & tendons around the knee is what hurts the most.
As for pacing.. it recently took me two days, with help, to complete a project that would normally take 4-6 hours - that is pacing..

Hi cookiebaker, must apologise, I not sure how you split reply up in sections like you did, I'll learn ohh I hear you in regards to around the house, that's me I have strategically place furniture so I have something to hold onto

Thank you for advice on the codeine, my doctor did say she was only given me a one off prescription until I get my appointment with the clinic, to be honest I've only tried it once. I took it, it did kinda numb me, pain was still there but my brain kinda didnt care I felt quite spaced out and didnt really like it.

 

[xxcazzyxx]

Oh dear, it posted when I hadnt finished @cookiebaker thank you for all what you put and sharing your status as is now, gentle hugs to you. I will definitely look up that battery analogy and the spoon, not heard of them, but that is why I'm here, to learn and educate myself. And that's how I found this place when I google, theres so many variations, but it's great to be amongst people that actually understand it. Currently looking at a local support group that meet once a month, when I'm feeling up to it I'm going to join

 

[xxcazzyxx]

Hi @sunkacola thank you for that, so much appreciated. And I probably needed to hear that advice on others, I do need to have a thicker skin. I think that's going to be another lesson for me on dealing with ignorance. I am usually tougher but lately I kinda feel fragile in my mind which is also new for me as that's usually not me.

I'm going to have a read of your post now. I'm on my silly phone, tomorrow will be easier to navigate as I'll dust my little laptop off.

Thank you, and take care

 

[JayCS]

Good morning all. I'll apologise now as I think my first post here is going to be a long one. Just so grateful I've found this place and reading

Hi cazzy - what better place for a longer post than your intro?! No need to apologize anyway!

I was diagnosed with fibro a month ago. Surprisingly it only took 2 months for my dr to diagnose. What I didn't realise and had not joined the dots as my dr did through my medical records. I been suffering for years with migraines, last year I got sent for mri brain scans as my face was numb and I literally lost words, I got confused in mid conversations. I've felt continuously tired. I also had x Ray's a while back on my leg as it got so sore.

Well I'd now contrast the diagnosis time as being "a few minutes" on the one hand, when your doc overviewed the dots and saw nothing else explains the fibro. With it actually being "the many years" whilst the dots were being collected. My diagnosis time similarly was 3 months, accelerated thru about 10 doc appointments pretty parallel (rheum 1, orthopedist, neurologist, psychiatrist, endocrinologist, rheum 2, GP). So the 1st rheum said no after his 1 month, the 2nd rheum said yes after her 1 month. 3-4 years earlier I'd asked my GP if it might be fibro, but none of us new exactly what we were looking for until it got worse, my wife shoved me to the rheums and I parallel crashed into the full flare I'm now still in.
Your diagnosis will have felt quicker just cos you'd never heard of it before.
Actually, the fibro criteria have been developed more and more to allow quicker diagnosis, quite apart from still urging following that up by further exclusions or other diagnoses.

About 4 months ago and the only way I can explain it, it was like my body had a migraine. My hips, legs, well from foot to

Great way of "explaining" it!

Before this I was very active, one hour walks in evening and 4 days at gym. I feel like I've had my life robbed from me. I currently work full time, although my boss has been great and I work from home when I cannot move for the pain. Which

Yeah, similar here, but crashed down from 48h/wk to 10 months sick leave and slow re-start. Working from home in a less stressful job would have helped me, and that's how I've now had to adapt it since I got a 2nd condition from the jabs (now 5-10h/wk, but 20h+ can be OK, but I can no longer commute at all).
Our life feeling robbed is a part of our grieving process, which can include denial, anger, sadness, and hopefully soon a sort of radical acceptance, allowing us to start a sort of new life under new conditions....

The amitriptyline is good at knocking me out so I'm now getting a solid 3 hours sleep before I wake up with the pain that

Yeah, I used amitriptyline for that too for 4 months in the beginning, and then worked on my (30) insomnia triggers and eventually found helpful supps, so it was a relief to stop the stuff when the side effects went up to 8. Now 3 hours of solid deep sleep is rare, but I can get my deep sleep up to 7h, and total 9h, med-free.
One of the side effects was it zombified me in the daytime, so the sleep didn't feel like true sleep at all.

I think right now my problem is with people. I use a crutch to walk with as it seems to hurt so much more in my right leg, and my pelvic area. The crutch helps me to walk upright and in turn alleviates some of the pain in my hip and pelvic area. These past few weeks I cannot walk far and its getting worse each day, I'm terrified it's going to get even more. Not sure how I'll cope with that. Anyways I managed to get in work yesterday, and a colleague see me walking into work. He then later said, oh look at you, woe me and hobbling! I basically told him to do one, but it really affected me, he then proceeded to say, i know someone with fibro and they didn't get diagnosed that quickly. And they dont need a stick. Just pain killers. .... To think people think I want to walk with a crutch to get a woe me is beyond me. Anyways I will get used to peoples attitudes I suppose.

I'll have a go at breaking this down even more, adding to the good comments.
Is it really "people"? Or was it praps just the one colleague who makes you fear there's more? Maybe it's comforting to be mindful that you are safe with others. Like your boss who has let you work from home any time.
What he said does seem heartless, so anger is very understandable. And then flanking that with some half knowledge....
To get over and cope better with things people say & think we have two threads, one more with humour and one more how to get people to understand.
Since I wouldn't want this to happen again I personally would think about trying to talk with this colleague, praps together with someone supporting me, and first ask how he meant it, then clarify what his "joking" around, or whatever he may call it, can do to "people" (or me), and that it is definitely not helping anyone in such a situation, praps turn the tables asking what he feels like if someone makes fun of him (or his mother or wife or child etc.) when feeling bad. Then on the knowledge level
I've experienced (myself and seen it) that people believe if we only use a cane part of the time, then we don't need it, so seem to be pretending, disregarding that situations can vary, it can be used as a bit of support, to prevent falls etc.
if you've seen one you've seen them all You now know more than one
'quick diagnosis': not completely wrong, most of us need ages to be diagnosed, but it's not "necessary"!
'don't need a stick': Again, not completely wrong, many of us don't need a stick for the fibro itself most of the time. But also: most of us will have times when we need some kind of physical support. (I use my bike a lot, a lot of "tricks", occasionally my wife.) Also it's not clear if it's 'just fibro' making you need the stick. So a possible question back could be: "Well, what do you think it is then, if you don't think it's fibro, Dr. ..... ?"
'pain killers': Does he know that pain killers don't help most of us much, some of us not at all?
And does he know how it feels to be in pain all the time?

Of course the emotional level is more important, and the knowledge part is only one side of the "four-sides model" where we could also question what he might be communicating about himself, his expectations, his relationship to you. And on our side also what we believe (possibly over-interpreting) what he might be communicating, so it's good to ask back if people really meant it like it sounded. Even if they did, that might make them think and correct themselves.

Getting used to attitudes you say - yeah, we do a bit, but it helps a lot to have a set of replies, questions back that work, to not allow ourselves to be victimized.

I suppose my question is, does it get better, am I going to get worse than this, will I need my crutch forever. Does this pain ever stop. I broke down last night to my partner. Told him I didn't want sympathy. But not sure how long mentally I can plant this fake smile on my face and say, oh well I'll be ok. It's not ok. I blinkin hurt. And I'm petrified the way it's going and seems to be getting worse, will It plateau out. Or end up needing a wheelchair. It just seems relentless, and I'm so so tired.

There are 100s of things we can try: mental, physical, diet, trigger preventing, supps & if necessary meds.
If we do these and find our way, it usually gets better, if we don't, it gets worse, cos we become sedentary, stiffer - lose it instead of using it, that then creates more problems, plus get more co-morbidities, age etc. A fake smile doesn't help, I find, but finding a deeper true optimism and motivation does.
If we do need to use crutches then best just for as short as possible, so that we don't habituate wrong postures etc. which cause further problems. In my case even Nordic walking sticks make my hands, wrists, elbows pains & arm ache worse, but exercising, stretching & acupressure helps everything.
Since you come from gym and walking, you should still have a sporty constitution, which you can build up on starting vey low and going slow - maybe not all the sports that were once possible, but first the easier ones and praps moments of the harder ones. I'll probably never be able to walk well again, but I can play table tennis most days, cycle, often slow, sometimes fast, and sometimes even short sprints or a short workout are possible and I enjoy every minute of those to the full.

Good to have you here, hope you find your way well!

 

[cookiebaker]

I felt quite spaced out and didnt really like it.

oh yeah, that is codeine for you, in spades!
it tends to make me queasy as well, so i avoid that like the plague.. hydrocodone makes me sleepy, so that is a bedtime only thing, and only on a very rare occasion - i have 1 left from my kidney stone episode recently (was only prescribed 7 to start with).. and that one is going to be saved for a while - for when i REALLY need it..

I not sure how you split reply up in sections like you did

not sure how you would go about it on a phone, but on a pc it is easy.. just highlight the text you want to quote, and the forum software will pop up with a couple of choices.. +Quote / Reply with Quote ... I usually take the 2nd option. I dont use my phone for things like this.. too hard to see (screen is too small, lol)

Learning to cope with the jerks out there in the real world can be hard, but the best thing you can do is ignore them, or maybe tell them to sod off, then ignore them, lol.. and yeah, sometimes one does feel fragile, both physically and mentally. Dont stress over it too much, it is all a part of the process of learning to cope with our new "normal".. one day at a time.. one minute at a time if that is what it takes.

 

[JamieMarc]

Welcome Cazzy! You found yourself a great support group here.
I just wanted to say something about your coworker. Ignore people like that. It's normal and okay to feel anger, but it's not okay to direct your anger outwardly because that just hurts you. That is just my own belief based upon experience and meditation. I believe that the emotion of anger is meant to show us how to transform that anger into something constructive, to grow or think or do differently. The best way to release that anger is to change your paradigm. Don't hold it in...use it to your benefit. People like your coworker don't deserve a response. Don't give them the satisfaction of even acknowledging them. And please do speak to your supervisor about your health and, if you feel it's appropriate, the way you are being treated by one or more of your colleagues.
We can't say whether our fibro will get better or worse or stay the same. All we can do is search for answers, support one another and lead a healthy lifestyle that is conducive to healing and well-being. You will find lots of ideas here and plenty of love and encouragement and support.
Hang in there and be strong. We're All in this together.

 

[xxcazzyxx]

@JamieMarc @cookiebaker @fimi @sunkacola @JayCS Thank you to everyone here. You all make so much sense. I've read through about 5times now. And took on board everything. I feel like from posting my first post a warm blanket of people, their experiences, their knowledge, it's like, 'someone gets me' at last. I know I've got a lot of learning and changing to do. My aim is, one thing each day. And I really look forward to growing and learning from everyone here.

My first action that I've done today, is tell my other half I want a tab or ipad for xmas so amongst other things, navigate this forum a bit better, it's a total pain on my phone. Oh I'm going to accomplish 2 things today, I'm meeting a friend I've been putting off, hard to explain shes a great friend of mine, and knows everything I been going through, but since this really bad flare up I've avoided as I kinda felt embarrassed for her to see me, going to put my big girl pants on and face it, and I know shes going to be fine with me. It's just my brain seems to be doing weird things with my thought process lately. But if not, hey ho will adjust my friends list

Again, thank you for lovely welcomes and all advise

 

[JayCS]

My aim is, one thing each day.

Great motto "for starters", to keep on our toes as much as possible.
In real life of course changing things can come in bunches & phases, needing a mental "rest" in between.
Also good to keep self-motivation up to make sure new habits take 3x to implement instead of 30x.
My daily blog helps me as a symptom, trigger, treatment, development, happiness & self-care diary.

 

[cookiebaker]

I'm meeting a friend I've been putting off,

if she is truly a friend she will understand and love you anyway!
I met up with a former co-worker/friend not to long ago, and it was a big boost for me, mentally - have since met up with her again and we enjoyed the time spent.
I did pair these meets with other errands I had to run, and i did get fairly worn out as a result, but it was so worth it to spend that little time with my friend - the emotional/mental support was so needed to feel even a little bit "normal" again.

as for the tablet/ipad - good idea!
I am more "old school" in that I like a proper monitor (bigger is better, lol) and keyboard, but if a tablet of some sort works for you, then go for it! I cant stand to do things on my phone.. i can do it and will if i have to, i just dont like to - the screen is far too small for these old eyes,

My aim is, one thing each day

fantastic goal - but at the same time, dont get discouraged if you cant handle the "each day" part of that.. even if you can only manage one thing each week, it is a plus! Be willing to forgive yourself if something does not work out on a given day.
and make sure you take time out every day to take care of YOU. Self care is the most important thing we can do to help ourselves.