Newbie with Fibro Need Advice

fibro1

Hello All

This is my first time here and would appreciate any help.

I was diagnosed about 3 weeks ago by a Rheumo. with Myofascial Pain Syndrome and Fibromyalgia.

Prior to this I've had hell with the medical profession. So first question is have others been left feeling like nothing by doctors?

I had a good profession but multiple illnesses destroyed my life. A GP refused referrals and I was not taken seriously. It has scarred me as I had been full of life and an achiever.

Eventually I got a good GP who took me seriously and put me on the right path. He left however. No GP since is like him and its been a struggle.

As I was told it was all in my head I believed it and I saw a well known shrink privately who exploited my vulnerability and milked the very large fees he got. I want to complain but I know from the GP episode that the GMC does little.

The Rheumotologist I saw was good and the diagnosis makes sense of the myriad problems I've had. Initially I was relieved but now sad because of losing my prime years. The Rheumo also discharged me after the one and only consultation and as I was stunned at the time I feel there is more I need to ask him.

This is perhaps not very coherent but I'm overcome with emotion as I write and I just want to know if other people have had similar experiences. I'd also like to know how people have coped emotionally and what they have done to empower themselves.

Thank you for reading.

flossy47

Hi fibro. I know exactly what you mean. I spent over a year trying to get my IA diagnosed. I kept seeing the same GP who didn't take my pain and swelling seriously. Every time i saw him i left the surgery feeling like i must be imagining the pain. I already suffered from depression and this attitude from the GP only seemed to make things worse. Last January i managed to see a different doc and she referred me to the rheummy department and physio. The physio didn't help very much as i still didn't have the pain under control. I must say that the consultant i see is great. He took one look at my hands and organised blood tests and x-rays for the same day. He also told me what was wrong and really put my mind at rest. I've been on my meds for about 6 months now and even though i still get flares i am coping alot better. I've even been able to wean myself off the anti-depressants.
I hope you can get everything sorted out. Just stick with it. Have you thought of changing doctors. It may seem a bit drastic but it might be worth a go.

Colin1

Hello Fibro 1
You have my sympathy, it’s a long and difficult road people like us travel Good GPs who can diagnose theses problems are few and far between. Like you I have been through the mill and back again. I assume you have now looked up your diagnoses on the PC by now. Both MPS and FM are difficult to diagnose as we are aware it can take some time in my case like you years. I suffer with Arthritis RA When I woul;d tell the Rheumy my symptoms she would say Thats not RA but could not tell me what it was. When I asked the reply was “I don’t know” I was labled COMPLICATED and suffering chronic pain. Because of this label when I got angina it was listed as chronic chest pain possible FM or arthritic pain. Then I had the heart attack.
I to went down the Psychiatric and Psycho-Semantic route to be told there was nothing wrong mentally I even went for counseling because the GP said I was suffering from Depression. Turned out the Councilor diagnosed sleep deprivation caused by chronic pain. I have also developed sleep apnea.
I now have my Arthritis under control and most of the other problems seem to be ok. I could go on forever but I won’t, the only advice I can give you is to try and live your life. You are in a situation you have no control over as are many of the people who use this web site, I know how hard it can be to cope and believe me when I say I have been in some dark places. You have to fight back I know you will still be in pain but fighting it and trying to cope makes me feel better. Without saying its all in the mind, if you sort out your head all those bad thoughts and feelings your half way there. Acceptance is another way of trying to deal with it. I’m sorry Fibro if I seem to teaching you how to suck eggs I used to hate it when people said BE POSITIVE or I KNOW HOW YOU FEEL , Being positive is a state of mind that’s hard to reach when you feel so ill and suffer so much. You never mentioned what meds you where on. If you feel the need to talk further please PM me and ill get back to you. Don’t despair you will have good days and you will feel better. I know its difficult but you should tell the GP how you feel and get him to answer some questions, or phone the Rheumy nurse at the hospital they run a clinic alongside the doctors and are well able to answer any questions you have. This is now getting like war and peace so ill leave it at that. I do hope you feel better soon.
Colin

Colin1

Sorry but one last thing, people like suffer from what i call invisible illness and some days we dont look to bad but feel like hell. Doctors dont seem to grasp that and if they cant see it or feel it they can be lost.
Colin

fibro1

Thank you Flossy and Colin for your sound guidance.

I am on Amitriptyline, initially at 25mg which really helped me sleep. I felt rested on waking albeit at almost midday.

Now I'm on 10mg as per GP advice and this is not as effective so bad sleep again. Decided to take 25mg on bad days and see how it goes.

Acceptance is difficult re. doctors but as you say Colin these things are outside our control, and accepting that helps.

Thanks

fibro1

Hi Colin

I know about the invisible illness and also about appearing ok. I have had depression and many people think that means either psychosis or learning disabilities. When they see I have neither they assume I'm alright. Looking young is also a nuisance as is being female as there is alot of fobbing off and not being taken seriously.

roses1

Hi Fibro,

Firstly welcome to the forum sorry its the circumstance that brings you to us! you will find us a friendly understanding lot

I have fibro along with other stuff but i fully know how dismissive gps and rheumos can be! may aswell add in other so called heath proffessionals! :x

Rheumos dont really want us fibro suffers and leave it to Gp's :x oooo i could go on and on i have been to the bottom and slowly crawling back up!
If you want to chat about anything you are very welcome to pm me and i will do my best to help. I fully understand the pain and misery!

I saw on a fibro website a t-shirt with this slogan on.

If it was all in my head i would take an asprin and be cured!
how true eh?


Keep your chin up , it will get better over time.
have some cyber ((((((hugs))))) and hope you are feeling a little better .

Rose x

fibro1

Hi Rosie

The asprin joke made me smile and thanks for your message.

There is much solace in an experience shared. Finding myself very isolated for years I became hyper self critical: it must be the vibe I give off or something that made doc's act as they did. You have confirmed it is not me or in my head. It may seem obvious but sometimes its hard to believe.

I hope to build on this and learn to deal with the condition and medics better in the future. Though I aim to find ways to help my own condition and not rely on the doc's.

kittymedaughter

Hiya Fibro 1...I have sent you a private message...I am sorry that you have got this awful illness, I like to compare it to arthritis of the muscles and soft ligaments/tendons as that is what is affected xx

bubbles

Hi fibro 1

Good to meet you, sorry to hear of the traumas that you have been through with fibro, Dr's that won't listen, Dr's that are in it for the money, not the patients. Makes me mad. I was retired from nursing, due to failing health, so I am more than used to Dr's that have the bed side manner of a crocodile.
I guess it took a while to have my diagnosis confirmed by the Rheumy, fortunately my GP's have been excellent, but they wanted me to see a Rheumy to confirm things. I have such a range of medical problems, I won't bore you, but they all seem to overlap each other. My Rheumy called it chronic widespread pain syndrome, so which I asked, is that Fybromyalgia? Yes, was his reply, so around here it seems to have a new name. But, unless you have it, experienced the brick wall that hits you from nowhere, the pain and exhaustion that drops your mood through the floor, so tired that you could sleep for England, but you never seem comfortable..........it goes on, as so many on the forum know all too well.

Medication can and does help, I don't know if your GP has considered pregabalin, it is not a miracle cure and it does not suit everyone. Amitryp is good for pain and neuropathy, I take 50 at the moment, the rheummy said I can have 200mg, :eek: :eek:
It might be worth having a chat with the GP again and asking about other options available to you.
I will stop nattering on. Take lots of care and look forward to your postings. XX Bubbles

Nellyphant

Hi Fibro

I was diagnosed with Fibro 4/2/11 after 10+ years of looking for the answer to me feeling dreadful. I have the same GP but got tough with him in 2010 about finding an answer after having skin cancer. Finally got referral to Rheumy who did the same as yours, diagnosed me after consultation and blood tests etc, gave me a leaflet and sent me on my way. Also had x-ray on hips and found OA there, that was found by the rheumy too so at least something else was done. I've had physio but it hasn't helped. Next month I'm going on a pain management course and I'm waiting for an appointment with a Pain Psycologist.

As far as meds go, I'm on 50mg amitriptyline a day, Duloxetine 40mg twice a day and Ibuprofen and co-codomol. I tried Gabapentin but it didn't agree with me. I saw a pain specialist too in August and he was happy with my medication.

Take care

vwkamper

Hi,
I hope your feeling a bit better,

I too have fibro and yes a lot of the problems i was haveing my doctor said it's just you and the way you are, i was 38 then so for 5 years i gave up going to the doc's, untill my husband changed doctor and so did i, i saw a lady because i thought i was going thru' the menopause and my monthly's were so bad i was useing babies nappies sometimes 2 i couldn't move the pain and hot sweats were unbareable-- anyway i saw a gynaecologist he got that sorted but he also noted a butterfly type rash on my face and a large circula legion on my neck he thought i could have lupus so i got put thru' to see the rheumatologist and bingo i was not mad i just had fibromyalgia 22years it took... so now i have 50mg of Amytritaline in the morning and 900mg gabapentin to help me sleep.

Now if i feel my pills don't work i up the dose myself then tell my doctor i need to be up graded you see with fibro there is no one good solution because everyone is different so will your medications need to be constantly reviewed.

Hope i've helped

vwkamper

fibro1

Wow- Thank you for sharing your experiences I'm really touched.

Fibromyalgia is like willow the wisp very tricky to pin down and everyday is different.

I too had major gyno problems: Endometriosis, Fibroids, PCOS etc so 2 weeks a month was bed ridden. The bad GP said 'all women get pain' and refused referral. 1st gyno I saw in 9years gave me something contraindicated for me and sent me away. It took 10 years to resolve the gyno problems - in the 21st century! Unable to work and too exhausted to do much.

Perhaps the Fibro underlies all that but hard to know as its a complex syndrome.

Seems I'm not alone hearing all your experiences. Our strength lies in this solidarity. For myself next time I go to see a doctor I will know many others are just like me. We are not mad, bad or lazy, its not all in our heads and we're not malingerers.

I'm also experimenting with Amitriptyline. 25mg knocks me out and 10mg does little. So vary the dose according to how I feel. Today went for a walk though windy and felt much better. I also find Foam Roller very helpful to alleviate back pain and ease the fascia.

love and best wishes to you all xxxxxxxxxxxxxxxxxxxx

dreamdaisy

Hello Fibro1, I have just read your thread through and I feel very angry that doctors can be so dismissive. I don't have fibromyalgia, just PsA (psoriatic arthritis) and OA but it took six years for the PsA to be diagnosed: I know that diagnosing these immune-based conditions and fibro can be tricky but for years my first GP disputed there was anything wrong with me despite my left knee inflating and inflating and inflating!

I know that many on here take amytryp, and the tendency is to down it between 7 and 8pm, so you are not too 'zombified' in the morning. Can you take a constant dose that is mid-way between the two figures you mentioned? Would that be more beneficial I wonder? I do not take it and am NOT a doctor, but if 10 isn't that helpful and 25 is too much surely there is some middle ground? I usually say talk to your GP about it - but there would appear to be little point in that. Grrrrrrrr. I hope you are having a better day today and that the weather where you are is not too severe. I am about to chase the water-butt lid for the third time today. :roll: Take care and keep in touch: I wish you well. DD

PollySid

fibro1 wrote:

The bad GP said 'all women get pain' and refused referral.

I just couldn't not have my say on this. It is unbelievable that a doctor have this attitude to women :eek:
I, too have seen doctors and specialists that have not had a good 'bedside manner'. I have come away in such a state from one appointment (not with OA) that I couldn't go back to work in the afternoon. Many doctors in the past have put ailments down to 'your age' (this ranged from 35-55).
Keep going fibro1, there are good doctors out there. My last two doctors have been great, they listen and explain things if I ask. The doctor I saw yesterday at OH was good too, and seemed to know what I meant when I explained my problems.
I think I may have FM too, as I have the pressure point pain, but have never pursued it, I just take the Co-codamel and Gabapentin, it helps.
I hope you soon get your pain under control and find an understanding doctor - they are out there I promise.

deedeeitsme

Hi there

I too have just been diagnosed with fibro after 5 months of seeing different doctors. I am taking codine and paracetamol, 2 of each 4 times a day and 2x15mg amatry once a day. I take the amatryp about 6pm and find it does help me sleep and I don't get up with the "hangover" feeling. When I first started taking them I didn't take them till bed time (11pm) and woke up feeling sooo bad. My doctor is very supportive though and I am trying to get back into work part time. She has put on my last "fit note" that my hours should be reduced to 4hrs a day from 8hrs a day but she has told me that if they refuse this i am NOT fit for work. She has also put mornings because once I am up and moving (with the help of my meds) I am at my best in the mornings. Hope you get things sorted x Dee x