New & feeling a tad lost ๐Ÿ™ˆ

Hi everyone, I am new to this site & also newly diagnosed with fibro. I am 28 years old and a mum of 1 (my son is 5 years old) I was diagnosed in January with fibro after suffering for many years thinking it was arthritis which I was told I had at age 7. I got on with life in pain until I could no longer stand it hence me pushing and getting a diagnosis of fibro. I also have endometriosis, ibs and of late am struggling with depression. Basically I am just looking for any advice on how to manage fibro my doctor has given me no meds not even a painkiller just said exercise is the best thing. I have no idea what to do next and feel lost & quite lonely. No one around me understands the pain I'm in or why I am always sooooo tired!!! Any advice would be grately appreciated. Sorry for the long post lol

Thanks for reading

Ashleigh x

14 Replies

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  • Hi Ashleigh86

    Welcome to the forum, and I sincerely hope that you find it useful, informative and loads of fun! I have pasted you a link below to our mother site, FibroAction which hosts loads of useful Fibro information:

    FibroAction Website:

    fibroaction.org

    I am so sorry to read that you are struggling and suffering so much, and I would recommend that you play the circuit at your surgery and see what GP's are more receptive to your Fibro and prescribe you some medications. I can imagine that most members on the forum are on two particular types of medications.There could include Neural inhibitors such as Amitriptyline and Gabapentin and then an out-and-out pain killer such as Co-Codamol and Naproxen.

    It may be worth discussing these medication options with a GP if you can find a more receptive one at your surgery? I want to genuinely and sincerely wish you all the very best of luck.

    All my hopes and dreams for you

    Ken

  • Hello and welcome.

    You could ask for a referal to a pain clinic. I understand that quite a few people have found them useful.

    If you have problems with you GP ask to see another one within you practice.

    Keep in touch and let us know how you get on and we can come up with other suggestions.

    Sue :)

  • Oh you poor thing!! Coping with pain as we do is bad enough but to have a little one to look after must be twice as bad! I totally agree with Ken and you need to get a new Dr!! That's the most important step!!!! Write down "ALL" the problems you are struggling with and ask for a referral to the pain management clinic and anything else they might suggest!! How on earth you cope without pain meds is applaudable, hats off to you for coping so well!! So....as I said..... New Dr first!! you can ask the receptionist at your surgery to recommend a Dr and tell them about the depression!! and then move on from there!! Taking Baby steps in the right direction is the best advice I can give you.. :-D :-D then hopefully the ball will start rolling!!.... Good luck sweetie... Much love...ninja...xxx

  • Hi, I got diagnosed with fybro 18months ago after apparently suffering with it for approx 4 years, I have also had arthritis 21 years. In some sense it was a relief to know what 'was wrong with me' but then in another it was 'oh god something else'. I am quite lucky though that I have a good support network with my GP and Hospital/Specialist, they have been a godsend! I would definitely say without them I don't know what I would do! You do need to push with your GP as a lot don't seem to believe in fybro. Some seem to throw whatever drugs at you which I couldn't function on and it seemed to be a whole big experiment at first.

    You will be given so much advice but obviously everyone is different!

    I also feel sometimes that nobody understands! However, I saw my Specialist yesterday and she was absolutely amazing after I had had an awful weekend she made me realise I will have these every now and then and stop beating myself up and adapt!

    Sounds like you need to get a good Dr first!

    Good luck!

    Sara x

  • Thank u all so much for your kind words. I have only one other doctor within my surgery and she is let's say not the best doctor!! So I am going to look for other surgeries in my area. Sara I was the same wen diagnosed "I'm not crazy" relieved that as u say I knew what was wrong but then just another thing to deal with. I had no idea what fibro was until I left the hospital and googled the life out of it lol

    I understand everyone is different but it is nice to not feel so alone ๐Ÿ˜Š

    ninja and Sue I asked about pain clinics and got another "oh possibly" clearly a new doc is the first step lol as for pain meds I had been taking Co codamol but have been for many years due to my endo so I dnt think they work for anything anymore ๐Ÿ™ˆ

    Once again thank u for ur support I'm smiling today ๐Ÿ˜Š

    Ash x

  • Hello there,

    Firstly I would like to send a huge (but gentle) hug!

    I am 26 and have been diagnosed about 6 months after suspected endo (but ruled out by a laparoscopy). I also suffer with IBS and at times depression. I pretty much understand what you are going through so you are not alone :)

    There are plenty of meds that you can try. I would say though, and I say it with gritted teeth, exercise really does help. I have only just realised that. I am 2 days without the tramadol or dihydrocodeine that I was on. Stretching is the only thing that really helps. I would strongly suggest a yoga or pilates class if you can. I do Body Balance and love it (I am not the exercising type by the way). I know the thought of it is horrid but it helps me so much.

    As for meds, I am no GP but from personal experience here are some drugs to look into:

    - Amitriptyline - antipressant (but not used much for depression any more), worked well for me but made me very tired. My friend takes it and gets no fatigue though.

    - Nortriptyline - sister drug to amitrip, didnt work for me

    - Gabapentin - Anti-epilepsy drug I think, I had a side effect to it but it works for a lot of people

    - Pregabalin - I have been taking this for months. Takes the edge off.

    - Tramadol - Strong painkiller. I took this up to 4 times a day until 2 days ago.

    You can be pushy with doc if you want to. Or better off finding a new one!

    Hope this helps, private message me if you want to xxxx

  • Hi Ashleigh86,

    I was quite distressed to read your post as I know how painful, exhausting and difficult all your conditions are to deal with. You're still so young and really in the prime of your life and should not have to deal with all this and care for a young child.

    I have only one piece of advice - Change Your Doctor ASAP!

    I had a family doctor for over 30 years who failed to recognised that I had Diabetes and Fibromyalgia - both of which were picked up by locums while he was away on holiday. I suspect that sometimes our family doctors are too close to us to actually see or accept what we're saying.

    Wishing you all the best going forward - remember that your health is your wealth so don't let anyone take that away from you.

  • I can agree exercise helps fibro, but I'm puzzled that there's no pain control if you need it. I do tai chi which is gentle enough to move the muscles and joints without overworking them, after all we're not training for a marathon on Antarctica. Others find yoga helpful.

    There was an item on the news about why paracetamol isn't that good, and I've found it fairly ineffective. I often think it kicks in just as a flare dies down anyway. I wont confuse matters by adding to the already good advice and information.

    I wish you success in your search for improvement. Good luck :)

  • I don't think it's possible to have Fibro and no medicine. That is asking you to endure far too much. I would think seriously about seeing another doctor. Although exercise does help this should be done in moderation. Have you thought about asking to see a physio?

    There are several Facebook groups which those of us with Fibro belong to. Believe me you are not alone.

    I struggle with the tiredness and depression as well. One of the things that has helped me is seeing a counsellor. She has also given me some relaxation tips. Even so there are still times when I feel as you seem to and don't feel I can cope.

    Just remember you are not alone.

  • I am overwhelmed by all ur kind words it is nice to know I'm not alone however I wish none of us had to suffer this horrible condition. I have seen a physio once she has given me light stretches but bluntly said as my pain isn't localised to one area she won't be able to continuously provide me with help. I have started yoga classes at my local leisure centre and actually quite enjoy it however the day after is horrendous I literally cannot move and this is hard as my class is a Friday so Saturday I'm immobile with pain and my boy is at home! He is recognising my pain and inability to do what I used to and it saddens me so much! I got some higher strength Co codamol from doc today as I went and refused to leave without pain killers. With easter holidays now I want to do so much with my son and can't let fibro prevent that.

    So I will see how they work and def look for a new doctor

    Thanks to everyone again

    Much love

    Ash x

  • Hi Ashleigh, i see further down you mention having an endocrinologist, I wonder, does that mean you have a thyroid condition too? Please ask your doctor to test for Low B12, Ferritin & Folate, as this can accompany both low thyroid and fibromyalgia. It certainly adds to the pain if you aren't being treated for it ( I speak from experience)! Also ask for a print out of the results, if they do test for it. Don't just accept it if they say everything is normal. We can have symptoms even if levels are "supposedly" normal! Best wishes MariLiz

  • Hi mariLiz

    No thyroid problems as far as I am aware.

    I mentioned I have endometriosis another condition. Sorry if I caused confusion xx

  • Sorry Ashleigh, I blame my Fibro foggy brain! Obviously didn't read your post carefully enough! Best wishes with everything, and hope you get a bit of help from everyone on here. MariLiz

  • No problem

    thank u

    hugs xx

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