Help wanted with research

[TheGreenSmile]

I would like to talk with anyone who is suffering with/from fibromyalgia. I have a Sister who has been suffering for years with this and due to my lack of knowledge about this condition, I failed to support her. I now have a friend suffering from the same condition and I wish to learn more so may, not only support anyone else I know, but also to hopefully work with others on finding a solution.

[Hidden]

If you have a look at fibromyalgia uk, there’s lots of information on there, as everyone is different as to how they suffer. Good luck and great you are trying to learn now.

[TheGreenSmile in reply to Hidden]

Thank you Blue52. Are you still suffering? I’m actually looking at what may have triggered the symptoms also. As well as if there is anything that people are doing to help them cope thus far. Hopefully if I can find a common area and bridge the link, maybe… just maybe

[Hidden in reply to TheGreenSmile]

Yes I still am suffering, as I said every one is different with fm, I suffer with migraines icts muscle fatigue cfs nerve damage I could go on and on, a long list of illnesses that go along side fm, you would be better off asking your friend and sister what they are actually suffering with fm, then google it and then give us all a bit of understanding of how you may be able to help them, apart from pain meds gentle exercise and pacing ourselves, we can’t properly answer your question, as there is no miracle cure .

[TheGreenSmile in reply to Hidden]

Hi Blue52,Fully appreciate your advice. I have spent several hours looking at sites and what has been said. I’ve also spoken at length with my friend. My sister however, probably is trying not to come across as one who is always complaining and is therefore a little more economic with the whole truth. But I’m hoping by making myself and others more aware that something positive may be achieved in the future.

[desquinn Partner Volunteer FMAUK Trustee in reply to TheGreenSmile]

TheGreenSmile we are always looking for people interested in research or helping with the community. Its a challenge for people to understand fibro and communicate about all it entails. Below are some links that may help and if you are interested in helping as a non fibro person then please get in touch

fmauk.org/history

fmauk.org/publications - info online and as pdfs

fmauk.org/resources - order publications

fmauk.org/volform

[TheGreenSmile in reply to desquinn]

Many thanks Desquinn…I’ll be sure to get back to you.

[BARTLETT1965]

I was diagnosed in the 90’s. Now the last rumo appointment was looking into problems because he though it had been diagnosed wrong and was doing tests to check. I always pointed to lupus as I had the rash which was confirm by a nurse specialist in Arthritis back then when travelling around the county giving advice on these problems and associated problems.

[Elizahl]

I was only diagnosed this year but have been suffering a couple of years with suspected fm. For me I lose power in my arms in legs and never have full strength my mobility is limited I feel exhausted a lot of the time and sometimes struggle with little tasks. Winter seems to be worse for me. I cannot manage to exercise and although walking is difficult I try to do a bit every day unless I am having a really bad day. I have recently started using a walking stick not something I wanted to do as I am just 40 but needs must and if it helps me stay mobile then so be it. Some days I can walk locally without issue other days it's pure agony but I am determined and keep doing it. I haven't found a medication that suits me unfortunately but I am seeing a physio and doing stretches daily which help. I have a tens machine for flare ups I have used it a few times and Epsom salt baths and take painkillers when needed. For support I would suggest just be understanding when they are having a bad day as it is extremely frustrating to them not to be able to do what they normally would or have planned try and compromise for example if you were to meet out for lunch and they ring to cancel because they do not feel up to it grab a take away and come yo them they will be happy to see you but don't over stay if they are really bad they may need to rest. Ask if they need any help while they it may be sticking on a loaf of washing or transferring a wash to a drier on preping for a meal later on or a run to the shop whatever helps them out just try to be a little open and they will be thankful for it. Best of luck the main thing is to have patients and remember if they are cancelling its nothing to do with you they just do not feel up to it. Also there is Braunton so little reminders before meet ups are good.

[TheGreenSmile in reply to Elizahl]

Hi Elizahl,Thank you so much for your feedback. What you have highlighted so far totally resonates with things I have experienced, being the person of very little to no understanding whatsoever with FM. Everything you said are the echoes from what my friend is going through… to which I was not very sympathetic to through totally lack of understanding and ignorance.

Would you mind if I were to ask you some personal questions, to help me best understand how this might have started for you? Maybe even use you as a case study. If you are willing. Feel free to say ‘no’. I won’t be offended. This is purely for my own research and maybe one day…. Who knows!!

[Elizahl in reply to TheGreenSmile]

I will try help if I can

[TheGreenSmile in reply to Elizahl]

I will give you and any others who which to assist, my private email address so everything discussed stays between us, remains so. I am concerned really with causes/triggers as well as remedies. And as there appears to be no remedy, so grows my curiosity for knowledge and a resolution. As I also work full time, I’m trying to keep my initial case studies to no more than 5 people of which you are the first. Hopefully as I gain more knowledge and understanding, I can increase my caseload.

[Ladame in reply to TheGreenSmile]

Hi, I was diagnosed in January 2020, so fairly recently. I also have rheumatoid arthritis and it was the rheumatologist who diagnosed me by testing (putting pressure on) several points around my body. The year before I was diagnosed I lost a close friend suddenly and this hit me hard and I believe it was this which triggered it. From when she died in June I just couldn’t get myself back on form, always tired and aching, random pain for no reason. After 6 months of this I asked for an appointment with the rheumatologist and was then diagnosed. Been on 10mg of amitriptyline but stopped taking it about 6 weeks ago under doctors advice as I was having problems with urinary retention, however I find I am much more alert without it as well but not sleeping as well. I take Tramadol for pain. Hope this helps you a little.

[TheGreenSmile in reply to Ladame]

Hi Elizahl and Ladame,Thank you both for being so open about your experiences with FM.

I would like to forward my contact details, but this page is advising not to share personal details… as I would like to start with you both as case studies.

I am still gathering information and trying to establish links between sufferers and what can be achieved in the short to help ease suffering, with the long term goal of hoping to significantly reduce pain levels to zero… for the majority.

I say this because I am aware that the issue is more complex and whilst I’m no specialist, I am driven by those I know and encouraged by those who were generous to share with me.

[JoLouise88]

Just wanted to say a big Thankyou for wanting to learn more about this horrid condition!! I got diagnosed a year and a half ago, and only my sister in law has taken the time to understand what my body is going through daily! I have a huge family and I’m kind of looked upon like a hypochondriac!! Sad really, but she finds lots of useful tips that I don’t and I will give anything a go!! Do you know some days it’s not about your own body but just pleading with people to understand! Any family member that wants to share this experience in knowledge is just a mental relief. Your sister will appreciate the time you are taking to understand her! I’m a believer that mine fibro was triggered with meningitis 10 years ago. I haven’t been right since then but with young children just gritted my teeth, over time is just got worse to the point without meds I physically cannot move! It’s awful, but it’s me and I’ve learnt to accept to take on the daily battle! If more people understood fibro, life would be so much easier to explain!! Good luck in your research! Any tips you come across would be greatly listened too!! X

[TheGreenSmile in reply to JoLouise88]

Hi JoLouise88,Thank you for getting in touch.

I’m sorry that your family don’t quite get this. I didn’t, I’m ashamed to admit, because I regard myself as a caring individual. After seeing the crippling effects is has on someone’s daily life… it really makes me feel ashamed that I didn’t take my Sister seriously. Other problem was she lives in New York… so I put it down to her being melodramatic.

The truth is, your days of how much pain you have to endure are totally unpredictable. The levels of pain are horrendous. Where the pain occurs in your body is unimaginable. One of my friends constantly gets migraines from this, on top of everything else. The fatigue. The sleepless nights. Where do I stop???

All this and you still have to get through your day, raising a family, looking after a home, working, shopping… when you feel like you need more rest.

Painkillers that aren’t really effective. Others that mess with your other bodily functions.

Your family and friends need a wake up call.

I will be sure to make suggestions and post any findings along my journey.

It’s still early days for me, but stories like yours truly inspire me to want to learn more and do more.

Enjoy the rest of your day, as far as you can.

I will be in touch…