Hey newbie here. So I was diagnosed with Fibro last Thursday and feel like I was fobbed off....Rheumatologist told me I had it, offered hydrotherapy and said see you in 12 months!....and that was it!!! I sat and cried in my car what felt like forever when I left as I felt hopeless! I was diagnosed with Primary Sjögren’s syndrome in 2017 and felt like crap ever since, I have getting worse in the last few months with pain that is everywhere....worse in other areas, stiffness on a morning, constant pain in my ribs that I’ve had for a couple of years now, tenderness etc....the list goes on! I currently take Hydroxychloroquine, Duloextine and Naproxen for the Sjogrens but nothing seems to touch the pain I’m experiencing with Fibro....I have took codeine and paracetamol along with naproxen and nothing so I’m feeling a little hopeless! I’ve read duloextine can be prescribed for Fibro but I don’t think it seems to help....it’s helped with the fatigue from Sjogrens but I think it caused my sleep disturbance....to be honest I don’t know whether it’s the medication or part of Fibro....just a little lost so looking for some advice guys. Thanks....sending gentle hugs, love and light x
Fibro Newbie : Hey newbie here. So I... - Fibromyalgia Acti...
Fibro Newbie
Hi Jadeer
How are you
Trust me I have been where you are
The doctors can't do much for our condition unfortunately
I was diagnosed by the rheumatologist too about 6 months back
It took the doctors over a year to find out what was wrong with me
But now I know what I have and I'm glad to know to be honest
My doctor has given me some medication to help with the pain
I have take gebapentin that the doctor prescribed to me
Maybe ask your doctor for medication
It does work
But it needs to get in your system first obviously
Sometimes my pain is worse on some days but other days it isn't
And on them good days
I try to live a normal life
That's all you can do really
I know its difficult
But I'm here if you need to ever need to talk, get advice ect
From
asam17
Hi Jadeer
I went through a kind of grieving process when first diagnosed. Drs can’t do much tbh other than pain management. Gabapentin didn’t work for me. Made me feel dizzy. I was diagnosed 3 years ago and you become very aware of your own body. Do not push yourself on your good days. Watch what you put into your body and cut down on caffeine and fizzy drinks. Water with fresh lemon is a good natural anti-inflammatory. Look into Bowen Therapy and yoga. Take your time and pace yourself. What you will learn very quickly is that what works for some doesn’t necessarily work for you. It’s not a cookie cutter Illness.
Bless ya hunny n welcome yup daunting confussing and in need of answers fibro sometimes does feel like a fob off like they ve stopped looking for whats wrong probably because its the answer they come to after ruling everything else out. Sometimes i think did they get it right but ive been for three second oppinions and yes they ve added stuff but fibro still remains there. I was told it was a made up illness new name for hypochondriac alsorts by people who wernt in pain n had no idea what i was going through, now i acceptthe diagnosis n ignore those who know nothing and my stress levels havecome down, take your time read the leaflets and if in doubt ask on here thereare so many fellow sufferers that will be only too happy too help warm gentle hugs sweety xxxxxxxx
Bonus is you have been diagnosed and offered hydrotherapy.I think 12 mths is a long time between your next appointment but see if it does help .you are on hydroxychloroquine which is given for muscle pain too.I think they can offer so much.If your condition worsens ask for emergency appointment. I wasnt actually prescribed anything first of all and thought diagnosis was not right.My gp prescribed me pregabalin later on which does have its side effects.This just had to be increased and increased for me.I begged to be sent back to rheumatologist who hospitalised me for a week on steroid drip.then before discharge diagnosed with RA too.
Hi yes about 5 years ago we sat in the hospital carpark and cried too after I was diagnosed after struggling for over 5 years - I have been given assorted drugs but have realised they have just made me feel worse and the pain hasn't reduced - so for the past 3 years I have been drug free (except the odd painkiller and the odd sleeping tablet) - I am on a gluten free , sugar free, no processed foods -just veg , white meats, fish , fruit, nuts and seeds and some vitamins - cod liver oil, calcium , magnesium - but I also do aqua , swim , and walk Finley, have to PACE , - and the hardest thing of all avoid stress - I still have bad days (but less) - and had to give up work - but there is life after fibromyalgia - good luck. Neese. x
Hi Neese
I also feel better on a gluten free diet adding in lots of fruit & veg, cutting out processed food (and dairy & sugar doesn’t agree with me either). I eat some fish but I find other meats to hard to digest.
I’m always tweaking my diet - people worry about me (last diet I did I lost too much weight when I didn’t need to). But I’m feeling better on this one! X
Oh I feel for you.
A similar thing happened to me.
A new Consultant told me I had Fibro, gave me a leaflet and discharged me.
I'm out in the wilderness on my own. My GP never sees me or even mentions Fibro when I visit. I also have various arthritis in most joints but take no meds other than Amitriptyline to help me sleep.
Sometimes I wonder if anyone even knows I'm here!
This site is a godsend.
We are all here to support you, ask anything, as someone here will also be experiencing it and may have an answer.
My best advice? Listen to your body, rest when you need to and avoid stress.
Big hugs
Sue x
That’s pretty much what happened to me , just a leaflet, referred back to my GP and amitriptyline tablets.
Same as me! I was starting to think I was on my own having been discharged until I seen your reply . Wouldn't even prescribe me the pain meds said they had to be prescribed by my GP so I had to wait for them to get the letter - first given Amitriptyline which didn't help and now I'm day two on trying Gabapentin.
Hi yes all the same for me too 🙁
I think you need to accept it firstly and get to know your body. Drugs will help and I’ve gone thru thinking their not doing anything and stopped them myself and then went back to the agony I first had. So I realised they are doing something. Get thru the bad times just rest sleep thru it it’ll pass sometimes it longer spells than others. But sometimes you will be ok enough to enjoy some Normal things in your life. Just be kind to yourself !! Remember you the best person to look after yourself !! Good luck we are all here xx
I’m in the same situation. I’ve been trying to get help and a diagnosis for years until I was finally sent to rheumatologist to be told I had fibromyalgia. They said they would refer me for exercise and pain control . I waited and waited for 8 weeks- nothing . I went back to my doctor who couldn’t help me as I was still under the hospital. I chased it up to be told I had been discharged!! OMG ! Now I’m waiting AGAIN with no help or pain relief. Finding it hard to function everyday to be honest . I was initially on a high that I had finally got a diagnosis, that was short lived unfortunately.
Sorry for the rant ! Hopefully we will both get sorted sooner rather than later x
Thank you all for your advice and support. I’m currently sitting in the doctors now and hoping that I get some answers and maybe some medication to try....gabapentin pregabalin and amitriptyline seems to come up a lot with Fibro and maybe it’s something I can suggest to try. I’m finding I’m having a lot of my problems with my hands and forearms at the minute....I could literally smash them off the way I’m feeling this morning! I’m in a job that is physical and don’t think it’s the right environment for me anymore so the stress of that isn’t helping either. The OHN has been pretty great but the questions I’m asked from management annoys the life out of me....I rang in this morning saying I wouldn’t be in today and that I’m going to the doctors, I explained that I’m in more pain than usual and haven’t slept with it last night....I was asked how the pain was preventing me from coming to work?! I felt like telling them to p**s off!!! I know questions have to be asked, it’s a business but I find it’s insensitive and feel like I have to constantly justify myself and it makes me really angry! I take lots of vitamins....cod liver oil, turmeric and black pepper, magnesium, amino acids, sea kelp, cranberry....going to buy some vitamin d today as I read that can help too. My diet could be better but more so not eating regular but a lot of that is due to the pain making me feel sick! Just a vicious circle I can’t seem to get out at the minute. Thinking of getting back to yoga and swimming....only thing is at the minute when I exert myself I pain a lot more!....still waiting in doctors!!! Love and light to you’s all x
Have you tried natural anti-inflammatories like omega 3, magnesium and turmeric? You may need very large doses but they work with your body unlike pharmaceuticals.
From 18 years experience i did go in a hydro pool everydAy if I cud..take up the offer it really helps.
Take the Hydro pool. It really helped me. I had it twice. First course with a class via the pain clinic. Second time I requested via my GP about a year later. Unfortunately its no longer available in my area anymore.
I know what you mean about feeling abandoned etc. Hopefully your doctor won't be replaced by one who asks sarcastically after I saw him for the first time "Did you diagnose yourself from the internet ?"
(I was diagnosed 10 years before that by a Rheumatologist)
It’s great you’ve been offered hydrotherapy! I would feel hopeful about that. I’ve never been offered it but wish I had. I feel better for a long warm bath so I reckon it would help!
I had primary Lupus when I started getting Fibromyalgia and now the Lupus is in remission and the Fibro has taken over. I find Nortriptyline helpful (I take it at night and it helps with sleep and some nerve pains). I find Naproxen and Tramadol help on bad days. Sometimes I add in paracetamol. I also take Citalopram in the mornings.
I work from home so I can pace myself and rest when I need to.
It’s always a difficult time getting a new diagnosis isn’t it? Lots to come to terms with. Take care and hang in there x
I practically live in my bath....it’s also a jacuzzi bath which helps a lot at times! And Lupus :(....not very nice is it but pleased you’re in remission as I know how nasty it can get....my friend has it....it was originally what they thought I had and when I was diagnosed with Sjogrens in 2017 I was a little relieved....I just long for a day to wake up feeling refreshed from an undisturbed sleep and feel little or no pain! Always hope....sending gentle hugs x
Thanks guys! Well my doctor wasn’t very happy at how my appointment went with the Rheumatologist and also thinks I was fobbed off....he asked if he explained anything about Fibromyalgia, or discussed medication, pain management, Fibromyalgia clinic etc....I was like nope he said we’ll try hydrotherapy and see you in 12 months! My doctor wasn’t happy at all and to be honest it made me a feel a little better cos I thought I was overreacting, he had the letter on file that my rheumatologist had sent after my appointment and said it basically says nothing apart from a diagnosis which is a positive so we know what we’re dealing with. My doctor is writing to him to tell him about how much pain I’m in and how I’ve basically been left to deal with it alone and wants a course of action in regards to what medication can I try and what he thinks about me going to pain management etc....although my doctor can prescribe meds, send me to pain management etc he said the Rheumatologist should of been the one to do this. He said hydrotherapy will help but we need to be looking at the long term also. He gave a fit note for work for 2 months with amended duties and hours so I’m pleased about that....it takes some pressure off....I’m in pain, feel like I’ve slept on a bag of rocks but just trying to deal with it the best I can. Love and light everyone xxx
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