Hello everyone : )I am new to this community and have only been diagnosed with Fibro since August of this year. I believe that I have had Fibro for about four years, this last year has been bad one.
I am 49 and have been on sick from work for four months now, the OH doctor is very reluctant to send me back to a safety critical post within the rail network until my meds are right. My Gp has me on Pregabalin 300mg per day, but that doesn't seem to be very effective because I need to supplement with Tramadol and paracetamol throughout the day then at night I take 50mg of Amitriptyline.
I feel like the Pregabalin doesn't seem to be working just yet, maybe i need to give it more time.
Thank you all in advance for the helpful info and I hope you are managing to stay pain free.
Got to say, it's the foggy head that i struggle with most.
Hi there Steve and welcome to our very supportive and informative site, the very best I know of. People here are very kind and will I have no doubt be able to help you.
My name here certainly is a vast reflection in how I am nearly all the time, forgetting things left right and centre
Could I suggest that you take a look at our mother site fibroaction.org where you will find a huge amount of useful information on which ever area you need help.
I really hope that you settle down here and look forward to getting to know you better!
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. There are an array of medications and other treatments that can be used to help curb your Fibro. You could discuss with your GP or Medical Specialist about Physiotherapy, Pain Management Clinic, CBT, Hydrotherapy ..... The list goes on?
I have pasted you two links to Fibro treatments, so I hope that you find these useful:
I would say from personal experience that it really is a case of trial and error when trying to establish a drugs regime that will work for you? And obviously this is going to take some time. So I really would return to see them and discuss this?
Join the club Steve. I am two years down the road and in the process of taking ill health retirement sadly. I take pregabalin 45 mg daily tramadol 150 mg daily cocodamol 6-8 tabs of 30/500 mg top strength. Still only helps a bit. I'm here if u want to talk. I'm on Fb too. Lucy Panasiuk. Take care. X
Hello I wonder if you could tell me more about ill health retirement as I have 16 hrs in a busy school and have been off for 9 month so far . I am having a telephone consultation with our o/t soon . I really feel the school environment too hectic for me . Can you give any advice
Hi Steve!! and welcome, I to was diagnosed with fibro at 49 (Dec2013) and was, at first, relieved that I wasn't going mad and my symptoms were real!! The amount of help and advice you will get on here is second to none!! With the pain will come frustration and tears, leaving behind the person you once were was a giant hurdle for me and a deep depression set in!! However I have the most amazing Dr who sent me for CBT and it's turned my thought process around to a different way of thinking and coping! I truly believe that this site helps and even if you don't write very often its great to just have a little read!! I must however warn you, there are some pretty crazy people on here and you may find yourself laughing out loud at some of the things they post!! ( I won't name them....you'll know who they are eventually) Much love... Ninja...xx
Hi Steve, You have already been armed with places to visit for reading up on Fibro, so I will just say welcome. It is a great place for both information and a giggle, take a look around and you will see for yourself. I was diagnosed just around a year ago but it maybe took a couple of years to get the diagnoses. I am not on a lot of medication (lucky me).
Hope you get sorted and can get back to work
Thanks for your replies and the links
I too have concerns that I may not be able to do my job anymore.
Am I right in thinking that Fibro is classed as a disability? if it is then I will push for a change of role.
I stepped down as a union rep at the start of the year and have given the new rep most of the relevant paperwork to familiarise himself with.
I am going to involve the union right from the start on my return to work.
Kind regards
Steve
Good morning Steve, so nice to meet you,
I am a bit concerned about your job being on the railways where you need to have your wits about you.
For the sake of safety you may like to look into seeing if there is another job that you could be moved onto.
Sorry if this sounds like a lecture but I spent many years working with guys who also did railway work and saw for myself the criteria that they needed to meet to even be allowed on site.
Not really the place to be with a foggy head.
Lecture over, welcome to our. at times rather nutty fun loving site.
Hugs sue xx
in reply to
I see that my last reply was probably unnecesay.
Hugs again Sue xx
in reply to
Good morning Sue, good to meet you too
I have to agree with your concerns. it is a very dangerous environment to work in and my job in the S&T (signals&telecomms) means I am trackside all day/night... On a positive note, there are many alternatives jobs within the railway.
Thank you for your concern and kindness xx
Hi Steve and welcome to our friendly fibro forum
I can see you have been given some useful links and some pleasant welcomes and hope you find the support that you need here
Any questions please don't hesitate to ask as someone is always just around the corner to come and help you if they can
Our Mother site contains a wealth of information regarding Fibromyalgia and is a good place to start reading up about it if you haven't found it yet and the link is:
fibroaction.org(Ken has give two links above from this site)
I look forward to seeing you around and send soft fluffie hugs and smiles to you
I see you've been chatting to a few members who are part of many members who contribute to this community. I do hope you find you gain knowledge and support from all the lovely members & our main website which Sian has kindly given you.
So Sorry Sweetheart!!! I tried the Pregablin, it didn't help me. Some people have good luck with it others not so much. I would think that 4 months you should feel some relief if it was going to give you any. I suffered for years without being diagnosed. I then went on without pain meds for along time. Finally I could take it No longer and went to pain clinic. That maybe an option for you in the future. Hope this helps!!! xxxx Mitzi
Good day Steve! So sorry to hear that fibro is effecting your health & life. I honestly wouldn't wish this syndrome on an enemy.
I wanted to compliment you on your willingness to consider other positions with the railway. Good for you! This shows that you truly respect the safety of others. Bravo!!
I too changed work fields to protect the safety of others. I would not risk anyone's life out of pride. I am very happy to see that you will not either. Be prepared for more than one change in your future however. Fibromyalgia is a shifting, tricky pain in the butt. I changed work fields a second time out of respect for my Directors as my absences increased. They truly needed a fulltime full speed employee to stay on top of their hectic schedules.
There is one area of fibro that most seriously effects a person's ability to work...can you think clearly?
Two symptoms can interfere with this. 1st is fibro fog...a state of inability to think clearly. 2nd is pain...what type & what dosage of medicine must you take to control your pain. That can also induce a state of inability to think clearly.
For me, both these symptoms were episodic, coming & going in short periods. I live in the USA. I worked in healthcare. Each year I filed paperwork with my employer clarifying that I would be taking my 90 days of federally guaranteed Family Medical Leave (FMLA) "as needed for fibromyalgia" My PCP wrote my script to say that my FMLA leave of absence would require absences in 5-14 days periods at a time. Using FMLA leave protected me from being fired, from being downgraded on my evaluations, and from losing pay raises due to absences related to my fibromyalgia!
Using FMLA in this manner kept me working an extra 5 yrs. It allowed me to choose when to come off work. Well, in so much as anyone with fibromyalgia can choose. But, it was important to me to work as long as I could. In fact, it was the addition of a back injury & ongoing bilateral sciatica to my health problems that finally took me off work completely.
I encourage you Steve, and others, to do each little thing that helps you to be as healthy as you can be, physically & mentally, at every given moment. There is no one big 50% fix in fibromyalgia. We all know that. However, 10 little 5 pt fixes will add up to feeling 50% better!
Foggy head gets me too... and insomnia. Foggy head makes me look stupid at work and I hate that. Today was a good day and I got loads done - clear head and back to my old self. But last week was a night mare - I couldn;t concentrate and looked liked a blone bimbo on some of the emails I sent out - so stupid. I can't always blame Fibro or explain the situation everytime to everyone so I tend to try and not send to much out when I'm having a foggy time.
Sums it up that I've had to go back to your post 4 times to get your name In my head! Welcome to FM. I've had it for last 5 years and seems to be getting a bit worse as time goes by. Started with complete meltdown triggered by work and family circumstances which meant I was onto CBT and DBT before real FM symptoms were identified but I was dismissed from Dep. Headteacher post and have been too sick to work since. I use pregabalin and cocodamol, plus amitryptilene , tegretol, propanalol and also diazepam and Prozac on adult basis. Life is tough and I am never pain free. Best drugs I think are cocodamol and amitryptilene, and I have no answers for the fog cos I am in a perpetual one! My family despair but I have to live each moment and not expect too much. It's taken a long time and I still get very down but this site helps so much. I finally realise I am not on my own and we all get by together. X
Hi Steve ... Welcome to the community ,I too have been off work for 9 months now and will be having a telephone consultation with my o/t re a staged return to work . I am nowhere near ready to face the busy school environment yet , my pay is running out , I get ESA and am in the process of applying for a pip. How are you coping with it all ?
Third time lucky
I meant to say "Good morning everyone
Thank you for the replies, I hope you are having a good, pain free day.
They say that as you get older, you get wiser, I have to say that in my case this is not so Lol.
We have a new, fairly large freezer and my wife and i struggled to get it in place without help, Note to self...Let others help!
How's your day been? Any other posts you've found interesting ?
Emma
Hello again,
I just wanted to update you on a few things. unfortunately the Pregablin didn't quite work for me and even after reaching maximum dosage, the relief was minimal and i still needed a large dosage of Tramadol too.
After slowly coming off Pregablin we have moved on to Gabapentin and i am still slowly increasing the dosage per doctors guidance.
With regard to work. I am still off of work (7 months) and have attended a 5 week pain management clinic which dealt mainly on positive attitude and gentle exercise. I also used some of that time to familiarize myself with the Equality Act 2010 before my HR meetings, i also took a union man along and to be honest i could see that they had done their homework too. The HR have offered to re-deploy me to off track (office vacancies) duties with no loss of terms/pay and payment for any travel if i should need to work out of another depot.
I wanted to tell you about my work situation as i know it is a big worry for all who are in the same situation as myself, We are covered under the Equality Act 2010 and as such all "Reasonable adjustments" should be explored.
I hope you are having a pain free day, take care and look after yourselves.
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