About me and fibromyalgia

[Lifechanging]

Hi I'm new to the group .. I suffer with fibromyalgia which I was diagnosed about 8 years ago now but was suffering for a good 8 or 10 years before I was told I have fibromyalgia so about 16 years or so now ..since being diagnosed I have been told with the last 6 years I have COPD empthysemia , asthma ,Osteoporosis,osteoarthritis..plus a few other health issues .... I'm struggling everyday with my health ...I have a cocktail of medications none of which seem to be helping I have changed many doctors and seen many all of which do not seem to have much knowledge on fibromyalgia I would desperately like to know if there is a specialist one can see in Cornwall many thanks

[BlueMermaid3]

Hi Lifechanging

Welcome to the forum I am sorry to hear you have so many health issues going on. I can very much sympathise with you.

Are you looking for a Rheumatologist by personal recommendation or are you happy with finding one from somewhere like the internet?

Is there any chance that you would be able to go privately? I appreciate that not everyone is able to do this, so I apologise in advance if that is not possible for you.

Have you tried looking on the internet to see if you can find a recommended Rheumatologist?

Have you asked your GP to look for a specialist for you? To be honest they should be doing that for you.

I am guessing that you have been to see your GP and asked for a review of your medications?

Many apologies for all the questions! Sometimes when we are in the midst of pain and ill health it is hard to think logically.

I look forward to chatting to you again.

Wishing you less pain and more peace

Lu xx

[Lifechanging in reply to BlueMermaid3]

Thank you BlueMermaid3 ... For replying to my post ... Have to say I have many issues one of which I have to read things several times and re-read then to take in the information and continuously keep going back and reading as I forget this is something that has happened in the past couple of years and is slowly getting worse so if at any time u reply to any messages I may take a little time to reply sorry .... I have asked my times for my GP's to send me to see someone else as a referral I have even been laughed at ...saying refer to to who ... As if I don't know what is happening to me and I'm making it up ... And when I see a doctor at my practice regarding my fibromyalgia pain and issues I leave In tears and they just say skelator pain and u will get that '..as if I don't know this but my fibromyalgia has never been managed In anyway properly .'to be honest I don't know where to start who I should see ...all I know is I'm In agony all day everyday ... I sleep sometimes for days on end ... I just feel I need help I'm not getting and I don't know where to turn .. Thank you for listening

[bluebell99]

Hello Lifechanging and welcome to our friendly fibro forum where you can get advice, support, help and information, along with a chuckle or two to lighten the mood.

Have you seen our Mother Site fmauk.org ? Here you can find out aout everything fibro including links and guides.

I am sorry you have other medical issues as well as fibro, you must be feeling the strain of all of this. It is often the way that fibro comes along when we have other conditions to put up with.

I am sorry I cannot help you find a specialist in Cornwall although members who live there may be able to post a name or hospital for you.

I believe I read somewhere of a specialist in Exeter and also Bristol, but these may be too far for you.

If you have found a doctor you like and trust but they need a bit more guidance, the fmauk.org site can send out information to your surgery anonymously.

It may be worth your while to ring the rheumatology department of a large hospital and ask one of the secretaries if they have a specialist in fibro working there.

If you look to your right in blue under Pinned Posts you will find help in navigating the forum and instructions on how to lock your posts, which we recommend to ensure internet security.

You will also have more replies as unlocked posts mean unlocked replies, and some members are reluctant to reply to them.

I do hope we will find you chatting around the forum in the future.

Kay

[Lifechanging in reply to bluebell99]

We reply soon bluebell99 thank you for your message X

[Janet28]

Hi Lifechanging and welcome to our wonderful forum ☺I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you & talking to others at different stages of their lives with Fibro & learning from their experiences.

It does help with the whole process & i wish I had found the site years ago. I have had Fibro for nearly 30 yrs & I'm still learning about it, like we all are.

I'm sorry you are suffering with your health so much and struggling to find a doctor that is knowledgeable about Fibro, I'm afraid this a problem that a lot of people with fibro have to deal with and it really is unfair. Anyway i see you already have some good advice which I can't really add to, just wanted to say Hi.

Peace, luv n light

Jan x

[Lifechanging in reply to Janet28]

Thank you janet28 for your message I will reply soon x

[Lifechanging in reply to Janet28]

Thank you Janet28 ....I wish I had found this group before I have problems absorbing information and this has really only happened over the past couple of years reading and filling out forms I get like panic attacks really weird .. So for me I have to read and re-read everything several time right it down and try and remember what I have read make note for everything and I still cannot remember so if I take a while to reply please forgive me I'm not ignoring your post ... Just to talk to someone about this illness is a bonus no matter what I can find that will help is greatly appreciated x

[Janet28 in reply to Lifechanging]

Awe bless you, I know exactly what you mean my friend and its not weird at all, I'm just the same. Some days I just cant do anything without panicking, some days I cant even write on the forum and then I get stressed out because I can't do that. I write everything important in my calendar and on my memo on my phone with reminders set but that's not always full proof because It could remind me and I get distracted and that's that, forgotten till to late lol. I write little notes to leave in a position that I can miss them, like on the kitchen window lol..I love to read but forget what I'm reading sometimes and have read the same page 3 times before I give it up as a bad job. I forget what I'm talking about half the time...It makes you feel like you have dementia or something does't it.

I was exactly the same as you & the site was a Godsend, as you say just to talk to other people with it because its scary when you don't know what you are dealing with and the site really is a lifeline for many people.

luv Jan xx

[rosewine]

Just to say welcome and hope one of our members who lives in your area might be able to help. I've noticed that in Cornwall there are alot of ME support groups who also deal with support for fibro patients I just googled fibromyalgia experts in cornwall and it was the firt one that came up. Perhaps one of those associations can help as there leaders all give email addresses, worth a try.x

[Lifechanging in reply to rosewine]

Rose wine thank you for your message I will reply soon x

[Lifechanging in reply to rosewine]

Thank you rosewine I will look into those ME support groups thank you kindly for replying to my post much appricate X

[Hidden]

SNAP There a lot of us in the same position ,It awful but we have to live don't we Let's hope you don't get the dreaded Tinatass As some of us on the foram have too Be happy XX

[Lifechanging]

Sadly Erny I don't feel like I'm living I just excist ... There is a difference I did live once ... Until I find some help I will never be happy ....

[TheAuthor]

Hi Lifechanging

Welocme to the forum and it is wonderful to make your acquaintance. I would have thought if there was a support group in your area they would know of any doctors (and the ones to avoid) so I have pasted you a link to the FMA UK cache on support groups below:

fmauk.org/contactsmenu/supp...

I want to sincerely wish you all the best of luck and please take care of yourself.

All my hopes and dreams for you

Ken

[Lifechanging in reply to TheAuthor]

Thank you for your kind words ......I will look into your link and thank you so much for your help best regards

[TheAuthor in reply to Lifechanging]

Good luck my friend.

[Newtali]

Have you asked your GP if you can be referre to pain management. If you don't have one at your local hospital I would imagine you can be referred to the nearest one. Also ask to be referred to physio.

Also worth trying non medical stuff such as heat pads, massage, osteopath, food supplements, vitamin D. I find Linnex heatbstick really good. Available on the internet Linnex.co.uk. Has been cleared as ok bu my pain manage,net consultant.

I hope you find some relief.

[Lifechanging in reply to Newtali]

Thank you Newtali ... I will look at link and order some of this product ... I have asked in the past many times about pain management .. They just say try this medication see how u get on but no one is listening to me that all these medications are not helping one med does one thing and causes other issues it's a visions circle ..and because I'm always back and forth for my GP for other medical issues ... No one I have ever seen regarding fibro has been In the least bit interested they just keep pushing it undear the carpet so to speak ... I have become so isolated over all these health issues .... I take vitamin D for osteoporosis there are lots of meds I cannot take as the interfer with my breathing and I do use heat pads ... Thank you for replying and listening to me much appreciated x

[Newtali in reply to Lifechanging]

I know what you mean about meds, side effects are terrible. I hope you find the Linnex helpful. It is not a cure but I have found it quite a life saver, it is the best pain relief I have found. It is expensive at £20 inc postage but it does last ages as you only need to use a small amount. It is well worth the money! If you buy 3 you don't have to pay postage. I keep one upstairs, one downstairs and one in my handbag!! I would advise trying with just a dab on each painful area to begin with. This is all I need for my neck as the skin is sensitive but I need more on my back. Start with a little and build up if it does not have any effect. It takes 5-10 minutes to take effect. If you find it is too hot just splash on some cool water! You will soon learn how much is the right amount for you.

Re pain management I would write to your practice manager to complain that you are not being listened to and want referral to pain management. If that doesn't work contact your local PALS who are the complaints dept for health services. Pain management have access to other treatments such as cortisone injections and lidocaine infusions. I am currently fighting for Botox injections as all other avenues have been explored with no effect. Some areas will give Botox but my area doesn't.

I hope and pray that the Linnex will help and you get some joy with pain management.

Let me know how you get on.

God bless.

[Winterwonderland]

Hello Lifechanging,

I’m so sorry to hear that you’re struggling so much with all your illnesses. That’s too bad that you have gone to doctors that don’t have much knowledge on Fibromyalgia. I started seeing a pain management doctor about ten years ago and he is wonderful, but before I made an appointment with him I asked him if he has done a lot of research on Fibromyalgia and if he was treating many patients with Fibromyalgia successfully. If you find that doctors are put off by your questions then that’s not the right doctor to see. I live in the U.S. so unfortunately I don’t know of any good pain management doctors to recommend. But I believe if you ask the above questions before you go in you’ll be on the right path to being successfully treated. I hope you have “lighter” pain days!