New to Fibro trying to let it soak in. But I feel like a fraud

[jekkstar]

Diagnosed a month ago...spend most of my time in pain or really tired. Try to walk 30 minutes a day as heard excercise helps. Have no meds as havinf reactions and waiting to clear system so that they can find a combo that works. Being investigated for early menopause (i am 33) had a 21 day period last month. This week I visited my GP as I have had pain in my jaw and chest all weekend. To be told its all to do with Fibro and my chest bone ribs and jaw is inflamed. No meds some cream to rub in. Still having monthly bloods as my inflammation markers are raised.

Oh yeah i forgot I also got relased from my place of work on medical grounds as they feel there is nothing further they can do to help!

Paracetamol doesnt even touch it so I dont bother.

When people see me.. I feel like a fraud they see me walking (not as far no where near as fast) . The look says it all.....

I'm hoping the future is brighter. I hope there is light at the end of this tunnel...

Please tell me there is!

[Sarahsyndrome]

Hi jekkstar. Firstly, you are certainly not a fraud - there are lots of hidden illnesses with symptoms which may not be immediately apparent to other people, fibro being among them. Try not to take too much notice of other people's comments or reactions, they are not going through it, so they cannot know what it is like. To a certain extent you need to develop a thick skin, as there will always be doubters out there.

Fibro can play havoc with your hormones and can make periods and menopausal symptoms much worse. If you are in premature menopause, hormonal treatments can help give you back some energy and lessen the unpleasant symptoms which are exacerbated by fibro.

The pain in your chest and jaw is quite common among fibro sufferers. The chest pain and pressure is called "costochondritis". It can be helped by pain relieving gel (e.g. voltarol which contains diclofenac). It can also be eased by using heat e.g. a wheat pack, hot water bottle, or the heat producing patches sold by chemists.

The jaw pain sounds like TMJ - might be worth mentioning your symptoms to your dentist, as mouthguards can be made for you to wear at night to prevent jaw clenching and pain from that.

I'm sorry to hear that your work have let you go. I've been in that situation quite a few times over the years myself, but finally fought back a couple of years ago. Fibro is a disabling condition covered by the Equality Act 2010. Employers are obliged by the act to make reasonable provisions to enable you to do your job e.g. flexible hours, provision of suitable equipment, working from home etc. If you feel that you were discriminated against by your employer, it might be worth speaking to a solicitor (many offer a half hour of free advice - or you could try the CAB) to see if you night have a case. I told my previous employer that if they wanted me to go, they'd have to make it worth my while not to sue them for disability discrimination - they paid up! I also find that being honest with an employer from the start about your health can be very worthwhile - my current employer is extremely accommodating and has bent over backwards to help me.

I am sorry to hear that you are not getting meds at the moment due to adverse reactions, but you likely will find a combination to suit you in time - they don't work miracles, but they can lessen the symptoms. It might also be worth asking your GP to refer you to a pain management program at a local hospital. They have a great deal of experience in dealing with long term chronic pain and may be able to suggest ways of coping with the pain and exhaustion, as well as recommending treatments. They may be able to help you with suitable exercises and ways of pacing yourself to lessen the impact on on your body of work, exercise and normal life.

There is hope - you will have bad days, but you will also have good days. By pacing yourself, you will be more able to make the most of the good times and enjoy life. Stress can make matters worse, so please try not to worry too much.

I sorry it's a bit of an essay, but I just wanted to let you know that all of us on here understand what you are going through and that we are here to listen and help each other out on those bad days x

[Hidden in reply to Sarahsyndrome]

Thank you I learnt a few things there as well I had no idea what the chest pain

Was called, I don't get that just rib pain, there is such a lot to learn about

Thanks again

Love viv

[Hidden]

Well if you have fibro you will have days when it is not as bad, and

You do get used to the pain I think, it's like greaving as your life is

Going to change and you will have to accept it this takes time I think

You have to learn to pace yourself which is hard. Some times you will

Feel fed up and wish things were different, join lots of forums this has

Helped me no end, find out if there is a fibro group near you, once you

Get your medication right for you thing will improve for you.

I am older than you are, but I to had a early menopause I was 36 thought

I was expecting, but I think this is rare if they are already investigating this

Then wait and see, as this might be why you are tired if you are bleeding

A lot.

Also has your GP referred you to a specialist, or the pain nurse both you

Are entitled to see you if want to. Have you Had a blood test for thryoid

As this as well make you tired with the pains if you have this

Don't get too down take one thing at a time, your periods, you may just

Need a scrap, or maybe you have fibroids lots of reasons not to worry

About until you know. If you have fibro it will make your pain worse, if you

Worry

And yes there is life at the end of the tunnel, I still work. It just takes time

And a understanding of fibro, read every thing you can, and not put every

Thing down to and remember that fibro is life changing, but not life threatening

This forum is very good with a lot of very caring people who have fibro as well

So it's good you are here.

Love viv

[Hidden]

Hi honey, and welcome to the site, i'm relativly new as well. I know what you mean about feeling like a fraud and i wish i could say it goes away but it doesn't however you do learn how to deal with it. I was diagnosed at 29 but believe i have had it since i was around 24/25 (i'm now 33). If people judge you do your best to let it fly over your head and see them as not worth your time. You know what to be true and if they wish to be ignorant then let it be or educate them.

I have found getting into a routine has helped but also to listen to it so i know when i need to rest it, unfortuntly no two people have the exact same fibro but we all help each other the best we can. You will have to keep on at your doctors to get the right medications and the does take time as you need to get the right balance....For me i can't be without my Amatryptalin otherwise i'm in agony and just don't sleep.

Stay strong honey and while you see no light their soon will be when you work out your limits and triggers, sorry if i'm a bit of point, i blame it on fibro fog oh and my spelling lol

xx Rachie xx

[irenegee]

Hello Jekkstar

I want to let you know things can get better. I have had fibro for over 10 years and understand exactly how you feel.

my advice to you is to get on an anti-depressant (serotonin levels deplete with fibro so these help to maintain a good level) they also help you cope while dealing with all the changes you are now facing. I am on Mitazipine and I have had no side effects unlike with amiltriptaline.

I would also ask your GP for some counselling or go to you local Womens Centre to get some CBT (for free and you will get seen quicker than through your Drs)

like you pain killers don't help me. I use hot baths, wheat bags and massage once a week, I also do yoga and meditation. I prefer the holistic route than popping pills route but i tried without anti-depressants and the results were not good, so until they find a cure (or I do) i will be on them. (but it is the only medication I'm on)

A good book that is just out and I have just read is Wendy Green 50 things you can do today to manage fibromyalgia. I think it is brilliant as it is pro-active. I borrowed it form the library but it is only £5-7 ish to buy

good luck and keep smiling

Oh and stop caring what other people think, their opinion doesn't matter.

you will find a way to deal with this although at the moment you may not feel like it. if you want to talk more feel free to Private message me.

[pagan1960]

I hope there is a light too. Some days are not too bad but most of the time I feel like you, with my whole body going mental. Don't worry about what other people think, if you can help it. You're not a fraud and it really is horrible condition. I read a Sunday Times columnists comment about Fibro being an ideal 'illness' for layabouts etc. I'd love him to be in my body for a day (if you see what I mean). He' soon change his tune. Chin up, matey xxx

[Extremelygrumpy]

Hi you are not a fraud at all... Antidepressants do help relax muscles and aid sleep I am on dosulepin... As you said its a matter of finding out what suits you.... I have chosochondritis thought it was a heart attack it was the first symptom I got with fibro.... One thing I have to add if the cream you have to rub on is volterol it does contain diclofenic and if you have irritable bowel syndrome like many of us on here ....that may give you chronic diahorrea well it does me ... Ps did I say I am the one on here who always gives TMI. If the rib pain gets really bad I take dihydrocodeine but obviously you will find put what suits you best

Nice to meet you though we all wish it wasnt under the fibro cloud

VG xx

[Hidden]

Hello and welcome ~ I am relatively new here less than 2 weeks, and have found so much information and support here ~ its a nice group.

It can be a shock to the system once diagnosed so give yourself time for it to sink in... and be thankful that it is not life threatening.. like the others say here it IS life changing but you can do it. Im not any form of pain relieft/medication other than the holistic route.. as I too have acute allergies to medication but do have a wonderful Dr who is open to alternative therapies albiet not all are on the NHS so can be costly which obviously has to be taken into consideration.

You will glean much information here along your journey with fibro, and be comforted to know that you are not alone ~ fibro can make you be very isolated and lonely feelings but that is different to being alone and here everyone understands what you are going through. Most of us have other diagnoses to contend with also, I for one for fibro is secondary to my other conditions so life changed big time the past 7 years. I am not on anit depressents either due to allergies, my GP has tried no end to find something medical without success so feel all avenues exhausted on the medical side. I take B12 and watch my nutrition, hot baths, gluten free diet, but really I am learning to be more kinder to myself and thats a huge step ~ as many fibro sufferers find this difficult as they want to be "normal" or like their old self, but its just not happening and the more you wish for the old you the more stress it can put. Exercise is minimal due to other conditions which is a shame and I do push myself through each day.. it sometimes can be a mind and body battle with the myriad of symptoms of fibro.. one day you can have clearer thoughts yet your body is telling you other wise, another the fibro fog just rainss on you like a big black cloud whereby it makes it difficult to do things, to focus even if you are having lesser muscle pain.

Most of us are trying in some way to find more answers to help each other ( along with research medically) so its worth just reading some of the blogs and information ~ take your time, its a wonder how it can make you feel when you hear others the same or even worse. Meditation has helped me but ive always done that... the connection in recognising and pre-empting any signs or symptoms so that I can manage them more effectively helps to... fibro takes a hold and each day is not the same so its adjusting and using what coping mechanisms you have that are best for you.

Some people will judge, but for me that is their lack of understanding and ignorance into this debilitating condition. Its extremely hurtful and something that we dont need when we are trying to make sense of it ourselves. It is not that we want this or to be like this .. it just is. Friends and family for me have proved to be the most difficult as from going from a gal that ran, went to the gym, worked all hours, and ran the home/garden/kids and all that it entails to someone who at times is a floppy as a bunny and in excruciating pain etc etc...the last words you want to hear are "whats wrong with you"? even after diagnosis it was still the same. I am not a burden to anyone and get no support other than from my children who are young and their love and understanding counts far more than anyone elses. Funny how I had a wish list of things to do ..like ski, go in a hot air balloon... and now my list is a reminder of what to do to get through the working day...thats if I remember where the list is.. ha ha.

You WILL be fine... yes change, pain, exhaustion, depression, exhaustion ( which is secondary to fibro) and all that this god forsaken illness entails will have an impact.. its going to be how you deal with those impacts that will make the difference to you.

YOU can get through this and hope that you have good support at home. Pace yourself, do what you can, learn as much as you can about fibro and the different effects it can have on you. Work with what works with you, it can take time but you will find what "agrees" with you and what doesnt ~ look at your diet and stay as positive as you can.

For now hugs to you all for better brighter days.

x

[jekkstar]

Thank you all ....the replys have been great to read. Making me feel a little less concerned and confused.

My family don't really understand, my husband and children do and they are attempting to adapt to. Sometimes without my husband I don't think I would cope. It amazes me how sometimes the smallest things either make me laugh and smile or make me scream and cry. No matter what he keeps me strong. I'm happiest alone so I only have to worry about myself, never use to but now I love my own space.

I am getting there and I think I am aware I'll never be the "old" me again, I am a new me now and its something I and everyone who knew me will just have to get used to.

Bit more positive....so its a good day today. Looking forward to the challenges that face me tomorrow

Again thanks for all your kind words and support.

Clare (jekkstar)

[irenegee in reply to jekkstar]

that's the best attitude (well I have found) good luck and keep smiling