Introducing myself

Hello everyone -

I'm really glad to have found this community. I was diagnosed with Fibro in September last year, but offered no treatment by the person who diagnosed me, or explanation for the diagnosis (every GP I saw thought I had a form of arthritis since the pain isn't muscular)

But since the pain was getting a bit much, I decided to roll with it and asked my GP about treatment. I wasn't offered painkillers as my body is already too tolerant of them - to the point diahydracoedine stopped having any effect (I suffer with other pain conditions and my whole life have just had different painkillers thrown at me to 'treat' it). The only thing I was offered was a cheap gym and pool membership. I've been attending the gym for over 8 weeks now, and the pain feels worse. My legs are now constantly in pain as opposed to just at night, or in the cold, which was the usual case of things.

I'm wondering if anyone else has been offered 'activity therapy' to treat their Fibro, and if so, how has it worked out for you?

23 Replies

  • Hi Deaf_Havana :)

    Welcome to the forum, I think it's the best place to be for advice and support for Fibromyalgia. Have you checked out our mother site ? There is a wealth of information about Fibromyalgia as well as all of us here, we're quite a friendly bunch that like to care and share.

    If you need answers about, doctors or even medicines,benefits, alternative medicines there are sections on the fibroaction site if you hit the link above. You'll also find sections about all the categories that are there on the right of the screen which is where you can browse through peoples posts.

    We're quite a friendly bunch that like to chat, discuss things and also have a laugh at times to help relieve some of the frustration we feel.

    However, we do have our serious sides too and are here to help and support if we can

    We all like to blow off steam whether its with a moan or a giggle so please don't be afraid to join in :)

    I haven't personally heard of 'activity therapy' unless it's called something different in different places........... is it physio based? or something the Gym offered?

    I'm sorry you have intolerances to the pain medications you are not alone as there are other members who can't take them either. Here is a link to one of our fact sheets FAQ - My current medication doesn't seem to be working, what treatments are recommended for Fibro? There are some helpful links on there you may find useful.

    Also, here's a link to the section discussing alternative/complementary therapies which you may like to check out :)

    I am not a medical professional and my advice should never override that of your GP I'm a fellow fibromite sharing some info :) please speak to your GP before starting anything new especially complementary therapies.

    Looking forward to seeing you around :)

    :) xxxsianxxx :)

  • You were just waiting for me to say that weren't you? How's you Pot? XX

    ps I assumed activity therapy is physio or gym membership.

  • Ahhh! hello kettle :)

    (just told sue on puppy post how I'm feeling, flaring :( too much to write again)

    It's good to clarify information sometimes :)

    How's you my friend? xx

  • I looked it up. Poor you. Frankincense scented hugs on their way. On a high from the weekend's activities but on a low going back to work. Why do I seem to attract losers. :( I think I intercepted some of those lavender fluffies, shall I send them on their way? :P

  • No as long as they were'nt mis-behaving? They could have been travelling to sue or {{{dee}}} bless her anyone know if she's ok?

  • No. As good as gold, as usual.

    Only in virtual land could they go from Geordie land to Yamyam land via Hampshire hog land

    Haven't heard from Lynn for a bit. Not since yesterday.

  • Hi, I've had lots of support since joining and a few laughs I hope your experience will be the same. No I have not been offered any activity therapy, I used to love exercise but cannot even finish an aerobics glass anymore because of the burning heavy pain in my arms & legs and save my energy to go to work now as bills still need to be paid ,I have been given amitriptyline but can't take them as I am like a zombie and have to drive every day, so have been changed to gabapentin , paracetamol and ibuprofen tablets and rubbing gel which are getting less and less effective . I was also told to go away and do my own research! One thing I have decided to do after advice and story's on here is to ask to be referred to a pain clinic which I shall be doing when I next see my gp

  • Hi Deaf_havana. Welcome to this lovely caring, dotty site. What you describe does seem a bit unfair especially as you're so young but a part of fibro seems to be resistance to painkillers. Some docs go with low dose antidepressants which can help with sleep and sometimes with pain.

    As far as gym goes, you're not training for a marathon. Listen to your body, be moderate and stop when you need to. The main thing is to keep the muscles and joints moving - low impact.

    We all try different things and sometimes they work. It's a matter of patience and seeing what's right for you. I do mild tai chi - I can't do some of the movements. I cycle a lot and walk. I do progressive muscle relaxation - it at least helps with sleep and a good night's rest does wonders when you get one. I've tried having a banana before bed. I've not taken up the offer yet nut may do later. Swimming is great as it's non weight bearing but you're not training for a channel crossing. My doc aid they don't really know the true details - which may explain why we get referred to rheumatology and neurology. There's not a real pattern. I get muscle/ ligament pain all over. Heat helps, heat pad or hot water bottle and I notice my cold tolerance is dropping. I only take codeine with paracetamol when it's excruciating but it doesn't do much even then. I'll leave it there as I bet one of the volunteers will be in soon with some useful links -which I keep forgetting.

    Don't be afraid yo ask - have a rant or join in the fun. We had a virtual beach party over the Easter Weekend. It was great and virtual chocolate isn't fattening.

    Gentle hugs. :)

  • Paul I`ve lost my answer again. It`s getting to be a habbit All that work for nothing. You, Nw and Sian have beat me to it now, Reminder to self... must click on reply. :(

  • I've being doing that a lot recently :o maybe its catching :P


  • Maybe if we ask nice they will put a flashing light on it. :P

  • Great idea :D

  • Wow, I really wasn't expecting so many lovely replies! Thank you all! To answer the general question, active therapy is a gym membership, but one that I've been referred to by my doctor at a subsidised rate because it's for my health. The program they put me on focuses a lot on exercising my legs, since that's where the majority of my pain is located, but they also put me on some arm/shoulder focused weight machines, which I thought seemed a little ignorant since I told them I've got a shoulder injury! I'm persevering though, maybe it just takes time for the work outs to pay off?

    Out of interest, is slow healing/not healing at all linked to fibromyalgia in any way? I've had the same shoulder injury for over a year now and it only gets worse, even with physio.

  • Hello Deaf_havana,

    Welcome to the FibroAction community !

    I see you've been given lot's of links to the website & info on pacing, TY Sian, Paul and everyone !

    So I thought I'd answer your question, from my personal understanding (no FibroAction hat on ) as we miss our restorative sleep part we do not experience the same chemical release like Growth Hormone etc. Link about sleep;

    So, basically if body builders try to gain muscle by working hard and micro-tearing their muscles they can as healthy people will have this phase and build up muscle. We do not have this so injuries can cause a lengthy period of time before any improvement is seen.

    You can read here more about the key findings & the problems with sleep;

    LIke you I am personally not so sure about the weights plus adequate pain relief & pacing slowly may be the key here. I think it is great your GP is willing to help and gentle exercise alongside a combined approach can be a good way to maintain an optimum level of health. Some members find other conditions get in the way or a virus knocks you back, but we all get back on the horse and support each other in our journey.

    I think if you manage a specialised program of exercises tailored for you after maybe printing our factsheets for any trainers at the gym you may find it managable. Please try not to think I feel OK I'll do another 10 reps as this may be the straw that breaks the camels back, you don't want to be worse or flat out with fatigue afterwards. Just a helpful hint as we've all done it !

    I would maybe keep a diary about what you felt like afterwards to adjust the amount you do accordingly. Some people find using Fibromyalgia Impact Questionnaires help to record symptoms, you can google and print as there are a few versions

    Hope this helps

    Emma :)

    FibroAction Administrator

  • Hi Deaf_Havana

    I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read that you are having so many problems with your Fibro, and I genuinely hope that you can find some resolution and relief to these issues.

    I can see that you have already been given some wonderful advice and some great web links, so I will just say welcome to the forum and I genuinely hope that you find it as useful as I do.

    All my hopes and dreams for you

    Ken x

  • Yes I've just been told that exercise cures all. I've booked a referral just waiting taken call back. Apparently the spiel being used now is that exercise is the new wonder drug. I'll let you know what happens. But I don't hold out much hope though I could be wrong

  • Hi Deaf-Havana,

    Welcome to what seems to be the mad house :) I would have been diagnosed around the same time as you and then found this site as I didn't know anything about Fibro. I have found everyone to be very helpful and friendly and always good for a laugh.

    I couldn't do aerobics as it would just put me off my feet altogether for a lot of days, I am about to try yogalates to see if it will be of any benefit. Don't do too much too quickly seems to be the key for me, but the one thing I have learned being on this forum is that what suits one may not suit another.

    I hope you can get a routine sorted that suits you :)

  • Everyone here is so welcoming - I'm really glad I managed to find this forum. It's great to be able to draw off other peoples experiences.

    I've never been told much about my condition to be honest - I was just told that I had it, and then I was sent packing...for example where Emma mentioned that we usually miss restorative sleep....I had no idea! Is there anything else I should know about it? I've been left very in the dark about the little details.

  • Hello Havana, my friend has a little girl called Havana, any way I was that peed yesterday that I forgot to click on reply I then forgot to say hello to you, :O

    I see that you would like more information. Go to the top of the page and click on the yellow butterfly that will take you to our mother site with lots of info. It may be a good idea to start with symptoms.

    I`ll let you have a look round and the you can come back to us on posts or questions and we will do our best to help or you can just join in on our war with the evil cats. :P hugs sue xx

  • hi deaf_havana welcome to the site hydrotherapy is good as you exercise in warm water it is the only one i can manage to do rheumatolagist said even if you can only manage 10 mins although i am often to tired to go .xx

  • Wow. Took a look round the mother-site and it's explained so much. I really do love my GP (been with him since I was about 11, very comfortable with him), but he's got next to no knowledge on this condition. That site cleared up a lot, particularly why I'm always so tired, and why I've had the same injury for over a year! And why I have chronic migraine syndrome! Psht. Getting quite sick of having to diagnose/treat/assess myself! Feels like all I ever do these days is research myself, take my findings to a doctor and tell them what I need prescribing/referring to etc. Wish Fibro was a more commonly known about condition.

    PS - Sue, your friends little girls name is lovely.

    PPS - Lillian, I had hydrotherapy mentioned to me once and then nothing came of it. Do you think it's worth pushing it again at my next appointment?

  • Hello Deaf_Havana,

    Glad to hear the information helped from our site, you can download & print these factsheets for you GP. If he/she queries the source they may be happy to know we have the Information Standard the same as the NHS, which means & information is all evidence based.

    If you wish to raise awareness in your local surgery or hospital we can send you out posters & leaflets which can be displayed. if you'd like a pack please email us Please also support our campaigns if you see them - One vote, One voice!

    Hydrotherapy is discussed in our Complementary Therapies factsheet which you may not have seen on the website,link below hope it helps;

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Deaf_Havana,

    I'm new here so I should have introduced myself. I've had fibromyalgia for many years and gone thru all the ups and downs.

    I started LDN about 6 months ago and started feeling better within weeks. Flareups still happen, but not as much. Also only last a few days vs. forever? This is info only, but check and see if it's an option for you.

    It changed my life, back to livable. I always keep the faith because we never know who will enter our lives and change it.

    Also, I find anything in the water is better.


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