I am new here, my name is Liz. I really wanted to share my story and see if any of you can give me some advice if you are in a similar scenario.
I have had a pretty busy and stressful 5 years which has lead to the situation I am in now. About 18 months ago I was diagnosed with Fibromyalgia, after about 2 years of tests to rule out anything else, I have suffered in pain for around 5-6 years. On top of the Fibromyalgia I also have DDD (degenerative disc disease) in the lower spine which was diagnosed not long after my daughter was born. The fibromyalgia, we believe, was triggered due to several traumatic events in the past 5 years including my mum having cancer when I was 6 months pregnant, my daughter at the age of 2 being diagnosed with epilepsy, the breakdown of my marriage and the passing of a loved one, along with having a stressful full time job, moving house, being in a new relationship etc. So as you can see I have had a packed 5 years. When I got my diagnosis it was somewhat a relief as then at least I knew I wasn't going crazy, but since the diagnosis my DDD has deteriorated, and whereas when this was first diagnosed I had 1 degenerative disc, now I have 3. I am under a consultant and undergoing treatments including facet joint injections directly into the spine to try and alleviate the pain from this and I am still under a lot of reviews for the fibromyalgia as I have not found the right medication to help this yet. I have tried counselling and I am currently on Amitriptyline, tramadol, naproxen, paracetamol and also propanalol for stress and anxiety. The propanalol is great and I have felt a lot less anxious than recently, but the pain from the fibromyalgia still is not under control.
I am quite overweight which is another problem, but due to the pain I am in and the disc problem I struggle to lose weight as I cannot do a lot of exercise, and my busy work/home schedule also does not help either. I try my best but really struggle. Due to all of the above I feel very low and have recently been diagnosed with low mood/depression. Right now I am sitting in work and typing this feeling like I am going to have a breakdown, I am in so much pain, feeling exhausted and just don't know what to do. Pain killers numb the pain but unfortunately I have been on them for so long now, they have less of an effect than they used to. The only way I can describe my pain is the way I told the doctors, which is I feel like I have been hit by a bus.
I have good days and bad days, recently mainly bad days for pain. I am just wondering if anyone has any advice on how to deal with the pain daily, I am really struggling at the minute.
Thanks for reading xx
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liz87
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Welcome to the site! Blimey! You don't do things by halves!!!
I've found it brilliant support over the years. One of the lovely ladies on here has named us Butterfly Warriors which sounds better than the 'f' word.
Dear Liz you really have been through an awful lot over them 5 years keep on at your doctors surgery to keep listening and work with you perhaps tryin a new med for the pain I got there in the end with a diagnosis and a lovely that doc that is so on top of my health care he is now askin me to go from 300mg gapentin to 900mg gradually building up and see how I get on I too have anxiety sometimes,I have sleep apnea and eventually tests for cfs it's okay to feel the way you do my goodness you are human after all have you much in the way of family support or a good friend someone to give you a hug and always know that they are there, I have a wonderful friend who picks me up on bed days when I can't do anything but also I txt her to tell her the good bits I've done as well today managed to have 4hrs with grandchildren with help walkin near the beach I no now to rest hot bath with some lavender oil. You say you have low mood depression I don't know many people on here that don't suffer with that so please don't feel alone is there anything that helps you relax? Xxxx
It's good to know I'm not alone. I have a really good support network in my family and boyfriend who is an excellent partner and step dad to my 6 year old little girl. I suppose over the last few years I have been the back bone of my family and held us all up when we lost my grandfather and my little girl being poorly, never been used to having to be looked after haha. I'm glad I have joined the group it's nice to talk to other people going through the same thing.
I will definitely speak with my gp and keep posting as well.
Thank you so much for your words of encouragement it means a lot.
Welcome to the forum. You are not alone, I have fibromyalgia, ramsay hunt syndrome, trigeminal neuropathy, I take 2700mg of gabapentin, lamotrigine, naproxen, paracetamol and I am struggling myself at the moment. I also have back problems and have had facet joint injections and facet joint rhizyolosis in the past, I am awaiting an appointment at the pain clinic. I am off work at the moment and have been since my mum passed away last year, this was the start of my derious health problems - apart from the back which I have had for 20+years. You will get a lot of advice on here and friends, I haven't been on the site long but I am sure will be both have great advice.
Hi Liz..wow..you are a superwoman! I have fibromyalgia...25 years now and this year told I have osteoarthritis in lower spine and M.E. All I can say is I understand your pain..well somewhat. Unfortunately I had to leave my physical job due to mobility issues. I just joined this forum in January and everyone has been such a great support for me as I packed so much frustration inside me for so long. I used to love walking non stop..but now it's a bit of a struggle..I can manage to do some Pilates and exercise in the warm pool...my diet is quite good so have kept weight down but being on amitriptyline and not moving as much my stomach can bloat up to make me look 7 months pregnant...No I'm not..lol
I know you're struggling but you have us and your supportive family. Good luck and feel pain free soon x
Hi liz87 Welcome to our wonderful forum 😀 I'm sure you will find it invaluable chatting to others who have similar experiences and at different stages of their lives with fibromyalgia.
I'm so sorry you have been through so much my friend, I'm not surprised you have been so Ill. It does take a long time to diagnose fibro & just as long to get the medication right. It's normally a concoction of meds that relieve the symptoms.
I have fibro & osteoarthritis along with polymyalgia, degenerative nerve damage in my back & feet and there is more you can get help with. Ask your gp if you can be referred to a pain clinic would be a start for you.
Please do go check out the mother site fmauk.org where you will find lots of useful information and links on fibro. There is other medication that helps and if your pain meds not working, you should go back to gp.
It's a good idea to lock your posts to the community so they are not accessible from the internet. If you look to right of screen you will see under "Pinned Posts" a number of blue links & instructions on how to lock it.
Just like to say welcome. You have certainly been through so many life changes and that is bound to take a physical and emotional toll on you. It sounds to me you are an amazingly strong woman to have withstood all that but I don't think you have had any time for yourself. Perhaps this is the time to let others look after you for a bit and give yourself permission not to be in control. Hopefully some medication combination can be found that will help your pain levels. That is the way I often describe my bad days as having been run over by a truck or a steam roller. Keep on posting as you will find alot if support here.x
Your story sounds oh so familiar liz, I too have suffered with this condition over the last 5-6yrs. Like you in that time I have been in a lot of pain and experienced the loss of close family whilst trying to remain main decision maker, run my own company and home, maintain a marriage and take care of my family. As a result I was on a lot of meds just to get me through the day. In the end for the sake of my mental and physical health I made the very difficult decision to stop working. It was always meant to be a temporary break but it has gone on longer than I anticipated. However In that time I have managed to ween myself off most of the meds and now only take one a day regularly with additional pain killers only when I really can't tolerate the pain. I have also had regular physio and have been attending CBT workshops to help with my low moods. I have also enquired about Hydrotherapy and acupuncture and I am just waiting to hear on these. In short I had to take a step back from the life I was leading as the stresses and pressure I was putting myself under were making me more and more ill. I needed to concentrate on getting myself back to a healthy state of body and mind. I am now planning on going back to work but my priorities in life have changed and I am looking to keep my life as simple and stress free as possible. What I would say is that this has all been possible because I ended up with a very decent and understanding GP so hopefully you will be as lucky. In the meantime, you have come to the right place to meet others who are going through similar experiences. There are lots of lovely people who can relate to how you feel, share advice and info and lend an ear to all your moans and rants. Welcome to the forum. Take care lovely xxx
Gentle hugs 🤗 you have had such a rough time! If you can get the book by Dr Rodger Murphree he has been helping people with Fibromyalgia for over 20 years. "Treating snd besting Fibromyalgia and Chronic Fatigue Syndrome ".
I have gone through lots of Fibro books but this one especially chapter10 is really helpful. I have often heard Fibro sufferers have too much "P" substsnce in their spinal fluid but no one tells you why!! This affect our pain threshold and we suffer heightened pain in our body eg if my hubby hugged me it would hurt!
Dr. Murphree says if you do not go into REM sleep you do not produce Serotonin which blocks "P" substance! When I did one if the questionnaires in his book It was clear to me I am short of Serotonin! But this Dr wants you to take natural remedies and recommends getting your sleep pattern sorted first by taking 5HTP (Holland and Barrett half price £8 plus £3.99 next day delivery) plus other vitamins such as magnesium,B vitamins and calcium. He also talks about exhausted adrenal glands and suggest other natural remedies to build your strength up.
Dr Murphree is like the piece of puzzle that has been missing all these years - he is a pharmaceutical nightmare as he is resisting all the drugs on offer at such an expense to everyone and suggesting natural remedies.
The world is at it's heighest in stress and now thousands all over the workd are paying the price of being burnt out where our bodies are wrecked with pain!
Truth is none of us are super human and I think we have lost the capacity to "just sit" "take time to smell the roses".
So many of Fibromyalgia suffers have taken such beatings in life with all the health and life difficulties and add trying to work full time and look after others and put up with negativity and hell from so many directions....any wonder we finally go under physically and emotionally!
However I truely believe following sound tested advice on how to come back from the brink of endless pain and taking more care of ourselves, resting and sleeping well, eating healthily and being around positive supportive loving people will be the step on the ladder to improved health.
This group is a great place to start because of the support and kindess people are willing to give and knowing you are not on your own as this is a great help.
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