I'm male 60yr old that's had Fibro for 6yrs now and boy has it stopped me living, once a very active fit guy with 30 employees running a great business to spending most of my time alone in my bedroom at home with my wife of 40yrs looking after my needs.
I've tried all kinds of treatments and spent a lot on private health care to be all a waste, my last attempt is now is Low Dose Naltrexone that I've came across and finding very interesting, I completed the on line forms and sent medical evidence to clinic 158 linked to Dicksons of Glasgow Chemist who will prescribe and supply LDN.
This was sent at 4pm Thursday 18th Feb, by 11am Friday 19th Feb I had an appointment booked for the consultation for tuesday 6th of April, what a great start, I'd had a fantastic conversation with Courtney on reception previously to my booking boosting my hopes in this venture.
I do have other health issues that's incurred in the past 6yrs, which I take meds for that being a heart attack, I also had COPD and Pneumoconiosis diagnosed from my earlier days in the coal mines that starting to really take its toll.
I would love to keep anyone interested in LDN treatment informed of my progress from day one with daily summarys of how I feel and the dosage effect as it may sway others to get involved and if at all have some kind of quality of life, at this moment in time I do not nor does my wife.
The outbreak of Covid 19 has made not one ounce of difference in my life as it has with millions of others, I'm on the highly vulnerable category but I wasn't or couldn't venture out due to the fibromyalgia, I would have been clawing the walls down previous to Fibro issues to be out, I don't know how people have coped if they have, but for me it gave me a great excuse to rest.
Take care, and if your not in love at least love yourself, your worth it 👍🏻😊
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Blublu112
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I am also 60 years old and I know what you mean about covid making no difference, I have me/cfs, oesteoarthritis, ibs, insomnia, chronic migraine and other problems in addition to fibro. Hope your trial with LDN goes well, I would be interested in hearing how it goes. .
Hi Hazel, I'm not clued up with the terminology of forums but I'm guessing you mean keep all the info I have on this column, yes ok will do, thank you xx Ray.
yes -that's exactly what I'm meaning. It helps to have your progress all in the one place ... not only for yourself, but for others following your journey. Also if someone does a search on LDN in future, they can read your journey in one place.
Hi There, I am so sorry to hear what you are going through and I feel the same that Covid hasn't made any difference to me in the way of going out anywhere. It has been a terrible virus with so many lives lost, and the hurt and grief that so many families are going through doesn't bear thinking about. I so miss seeing my family and friends as they will take me out at times as I don't drive , and it is great to get a change of scenery for a wee while. My life is spent in the house mostly apart from a walk to the local shop on a good day, and that can be a struggle and painful.
It isn't all fibro as I have neck knee and back issues, and was such an active person looking after my parents, sister, husband and my 3 sons, and helping out at times also with the grandchildren for years. I am positive this set me on the road to taking fibro in my case with having pains for years that I wouldn't go and see my G.P. about. You think you are going off your head at times as the pains would be so different from day to day and in all different places with electric shock type pains too. I know everyone has different experiences, but they say stress can play a major factor. I did read somewhere that a lot of male war veterans with PTSD have taken Fibromyalgia . I know it just wasn't the physical work I was doing with family over the years , but the worrying also about their failing health affected me badly when you love your family so much. Eventually I had to find out what was going on with me and the G.P. told me my body just didn't know how to relax, and if I didn't stop what I was doing I was going to need someone looking after me. Diagnosis was Fibromyalgia and chronic fatigue.
You seem to have been so active and busy with running a business and looking after employees , and it is possible along with the other health issues you are having to cope with, that your body has said enough is enough??? I have heard of Naltrexone but don't know anyone who is taking it. I do so hope this is the answer to your prayers and starts to work for you, feel free to let me know how you get on. There are lots of books on Fibromyalgia, and I used to get the Fibromyalgia UK monthly magazine. You can also read it online. I read the book by Dr. Jacob Tietlebaum (hope I got that right) an American Dr who took Fibro himself, so there is info out there . What works for some doesn't for others and you will know it is called "The Invisible Enemy". I get told all the time I look so well, but people don't realise you can be in agony, it is such a weird and not so wonderful a condition!!!
I attended the Pain Clinic, but to be honest I feel it is a waste of time now. I was put on Amitriptyline when first diagnosed with my GP which did help along with Cocodamols, but as my life got busier they were doing nothing for me. My husband became my priority as he became very ill for 3 years. Thankfully I got the strength from somewhere to keep going and make sure he was kept as comfy and as well cared for as possible, though he was a joy to look after, and showed great spirit and strength throughout his illness . When the GP did a house visit at one stage I had a quiet word with her, and told her I just couldn't stand the burning stabbing pains much longer and she started me on Pregabalin. 2/3 days later I couldn't honestly believe that I was getting pain relief after only taking them for such a short time and it felt like sheer heaven for the first time in a long time. When my husband passed away a few weeks later the fibro pains went haywire as you have no control over how your emotions affect your body, and the G.P then increased the dosage twice, ending up on 150mg which I believe isn't very high as have friends on them for other conditions and who swear by them. I eventually started taking side effects and had to come of them. My meds are now Tramadol along with Paracetamol which help with the fibro and the chronic pains.
The Pain Clinic Consultant advice is " Pace Pace Pace yourself " which isn't easy to do, and you get so exhausted at times you have no other option but to be in bed. He doesn't like his patients getting medication if at all possible , neither do I , but I couldn't get through the day or night without them sadly. On better days I feel us "fibro warriors" seem to try and catch up with things and keep pushing ourselves , then we end up overdoing it causing Flare-ups which are horrendous as you probably know. It took a while for family and friends to realise that I just couldn't go to functions and things. At times I did try, but it was no joy sitting in agony and wanting to get home to lie down. I could say I would go somewhere and then would have to cancel. Taking a shower even can cause a flare-up , so many simple things we once took for granted.
I have turned 67 now and touch wood haven't had a bad flare-up for a wee while though the chronic pain is always around. When doing household chores or whatever I know when my body starts complaining and I really have to force myself to give in and take some bedrest. Not the place you want to be when you have been so active, you want to be up and doing, but it is necessary ! I do so hope the medication works for you, and as time goes on you start to get some relief and feel more human again. Other than my pain killers, I use hot water bottles a Tens Machine and bedrest during flare-ups. Good Luck I wish you well! God Bless! x (As always my emails seem to be HUGE!!! my apologies)
Hello ma'am, sorry I'd like to call you by your name, so sorry you have had so much tragedy and suffering at the same time, I replied earlier after writing a long message, then got sidetracked and lost the page !!! Grrrr lol.Whilst being in pain and misery for a while now, I've had time to reflect on life, my working life previous was extremely fast, pretty stressful at times & demanding, when it's all gone you think what on earth is that all about, its survival, wether your a grafter or sherker life is challenging, obviously rewarding at times, I find thinking about funny incidents in my life always makes me smile, then I don't feel so bad, I had 54yrs of fun really, but we can all relate to horrible moments too. I'm really shocked at some of the comments I read on these sites, whereas young people could down with this problem and oh dear me, it's shocking, I'm not too please with the NHS attitude towards this problem, it seems your yard with the same brush as someone that's never worked.
Luckily my GP knew me and my company so he was left scratching his head when all my test come back clear but could see the distress this problem was causing. Yes, I believe stress is a major factor in this condition, my biggest problem started in 2008 when the country went into recession, I was under immense pressure to keep staff in work, and most were locals from my village, we got by but after 6yrs I suffered a heart attack in 2014 forcing me to quit my business, it was took over and runs today but a much smaller scale, it was after the pains developed,
I've tried many option and to be honest I'm running out of ideas, I have pneumoconiosis from working in the coal mines for half my working life, this past year it's got worse, and I don't think I'll see 65, it progressing pretty fast, I'll soon be on oxygen to breath, so this attempt to ease the pains with LDN will be my last attempt, if it don't help I'll except I've lost and just wait for the inevitable.
Anyhow, I'm going to keep posting on this thread my experience to acquiring LDN and a day by day account, so keep checking 👍🏻😊
Tuesday 6th April is my consultation, I'm starting to ween off morphine in the next couple of weeks as well as Pregabalin that's bloated my six pack out of shape 😏 So I may starts LDN meds straight after consultation, it be nice to start the 9th April. It's my 🎉 Birthday 🎉 I guess I'll do the same as last year, stop in !!! Please stay in touch
Hi Ray, Thanks for replying . I am so sorry to hear about the terrible struggles you had losing your business and worrying about your workforce and your lung problems from working in the mines and then having a heart attack on top of it all. Such a difficult time for you and your wife going through all of that. Stress plays a major role I feel in Fibromyalgia and that was the last thing you needed on top of everything else.
I have been on this website for several years now and I find everyone who has Fibromyalgia always seems to be dealing with so many other health conditions, and I really have to count my blessings that at least in the home and on short distances I can still walk. I have found at times the "Fibro Warriors" on here can give you a such a boost inspite of them dealing with so much themselves, but still listen and advise if they can, when you are at your lowest ebb.
My husband was diagnosed with leukaemia and Renal Cancer (one kidney was totally gone) the day my week my wonderful sister passed away. He had held down a stressful job for years and was very conscientious in everything he did and was a great support to me even though driving hundreds of miles in a week and up at 4am some mornings ,but he still managed to take time to help me with my parents and my older sister with Downs Syndrome who took dementia. My parents loved him and said he was more like a son to them.
My sister never had health problems of any kind growing up, we were very lucky that way but the dementia after a year caused her to stop talking walking and her swallowing became involved having to have a feeding peg put in place. She was so well cared for by my parents and our family all through her life and because of her swallowing problem she was in and out hospital with aspirating pneumonia. I wouldn't leave her in hospital as had seen so many things happen that shouldn't have when I wasn't there, and with her not being able to communicate I wanted to make sure everything was as it should and swore while in hospital I wouldn't leave her till I saw her settled for the night and then went home to try and sleep . To be honest that became a struggle as I couldn't sleep for worrying about her. My Mum thank God had passed away and though I was heartbroken I was so glad she didn't need to witness my sister deteriorating so quickly ,as her memory had only started to go slightly when my Mum had had a massive stroke.
I had thought with just my Dad to help care for now that myself and my husband would maybe get a bit of respite and rest. He was always very slim built but had lost weight and his colour wasn't good. I kept commenting on this and he said he felt fine but I pleaded with him to go and get his bloods checked at least, I knew when he got a call to make an appointment that something was up and he was in the waiting room of the surgery when I phoned to tell him about my sister passing. The Dr suspected Leukaemia and he was booked in at the hospital that week for further tests which proved he had Renal Cancer also.
We seemed to get the strength from somewhere , and he always said to me there was always someone worse off than him. He worried more about me I felt with having to look after him , but he did have many good spells and he always kept himself busy when he could as he was never one to sit about unless there was sport or something on t.v. and he always had his nose in a book at bedtime. We had another 3 years together which I realised later that not everyone is lucky enough to have, and we tried to deal with one day at a time as best we could and not look too far ahead. Grief is such a terrible pain that you don't lose, and I didn't expect to be moving house a year and a bit after he passed. I felt so unwell, but the family wanted me nearer them as I was a wee bit isolated where we lived, and with not driving the bus stop was all uphill and a distance away and there wasn't even a shop close by. I went back to where our 3 sons were brought up, and where all my good friends still are that I have never lost over the years, and everything and everyone is so closer now and I get to see my grandchildren a lot more who are a delight. The move was so hard going on me as my sons were all working throughout the day and I was packing as much as I could on my own and this really made my knees and back so much worse causing more damage.
I know for a fact the stressful life we were both living and watching my sister being ill was trauma , and still looking after my Dad also (I had wanted him to move in with us but he wouldn't leave the family home ) most definately took it's toll affecting my husband's health and making the fibro worse. I am sorry to give you all this doom and gloom but I am still here to tell the tale, so please please don't give up!!! We worry about what may happen in the future and that causes even more stress, and it is human nature to worry but I still try and take one day at a time, the present is all any of us have!!! Who knows what treatments may become available for you? If you don't mind I will keep you in my prayers, my nephew who has just turned 50 and is like a son to me has recently been diagnosed with cancer and not a great diagnosis, though he has been doing so well with the amount of chemo he is getting thank God. We still manage to have a good old giggle and that is what keeps us going and he hasn't lost his sense of humour thank God. We do love to have a laugh it really is the best medicine, and myself and my husband laughed often and tried to keep upbeat for one another if possible. I haven't seen my nephew since before Christmas because of Covid but hopefully things will improve. He has had stressful jobs over the years also and with mobile phones and computers these days I feel people aren't getting away from work even in evenings and weekends. My sons tell me I still live in the black and white days lol!!! I have done what you did so often on here. I have typed a massive email then lost it all. Best wishes to you and your family here's hoping this new medication will help. Healing hugs from Bonnie Scotland, Carol x
Good morning Carol, your right about carrying on, we have an inbuilt device in all of us to somehow carry on thru thick and thin, I always find on my worst days, the day after it don't seem half as bad, like having a problem I can always resolve it better the next day.These days I like to watch and learn about history and when you learn how some went thru wars etc it's unbelievable what they endured and still got thru it. But all bad experiences leave a scar and then there's a breaking point.
It seems at this moment in time when we should be totally winding down in life and enjoy it turns out to be an existence, the lockdown doesn't help, it seems this is going to carry on for sometime, and people are getting very frustrated hence the rallies that are causing issues.
I can't be bothered to watch the news at the moment, it's to depressing, I never watch tv now, I have some interesting hobbies that I enjoy, I've also collected a lot of old miners gas lamps that I refurbish and now sell, there's been quite a few gone up to Scotland as well as my mine headstocks that I've designed on my laser cutter, I could actually start a good business with them but I'm not reliable to follow thru on a day to day so I just keep it low key, I have some good relationships with many a Scotsmen, we banter away about the best mines that was.
I also design model railway buildings and structures then cut and engrave on my laser machine, that fun and interesting, doing special builds for a group in Wales, I'll show you some pictures if you would like to see some samples.
I never had time for hobbies when working, but my business was my hobby, I absolutly loved it and the people who worked within.
Well just finishing my third cuppa in bed and now the painkillers have started to work I'll start moving and get up, it's actually early for me today, I do have to sleep twice a day, if I go a full day awake and plod on I end up having the following day in bed in agony so just do bits at a time.
Hi Ray, That's wonderful that you have such great hobbies that you are still able to do, it keeps the mind and body active and collecting and refurbishing miners gas lamps that's great! I don't watch much of the news either it is so depressing at times.
I have been trying to do my family tree for a while and I have noticed that a lot of my male ancestors worked as miners or in the ship yards in Glasgow. There was a lot of steel industry works in the Lanarkshire area also where I was brought up but as you know they are all away like everywhere in the UK now.
Ray there is a way to private message on this forum, one or two have been in contact with me over the years and have used it to chat. I am not sure if I remember how to do it but as my emails are so long I am not sure all our "Fibro Warriors" would want to hear my bletherings lol! I will try and find out so I can chat privately to you if you want? Failing that, maybe you could become a facebook friend and we could chat that way if that would be ok if you wanted to keep in touch and let me know how you are doing. I don't mind I have time on my hands these days.
I am even thinking about rehoming a cat. Our last rescue dog passed away in Nov 2018 and I took it so badly as still grieving for my best friend my husband and it hit me like a truck again, and I promised myself Rocky would be the last pet. He was a sharpei/staffie my middle sons dog really but our family dog really. I couldn't walk him latterly with my knees but my husband did the dog walking when the boys got married or moved out of the house. I managed to get a lovely dog walker and we became good friends. In total we had 2 rescue dogs and 2 rescue cats over the years but not all at the one time.
My daughter in law said I could give a good home to a cat (she has one) and as I am rarely out it would be good company. I struggled with hoovering up every day after Rocky he cast so much, and I used to be a wee bit ocd keeping the house clean but though I am still fussy I just can't do now what I used to. I prefer dogs to be honest, but with not being able to enjoy dog walking anymore and having to get a dog walker I decided no more pets.
The house I moved to is so much smaller and easier for me to keep on top of things. So I am having a wee look on the various Cat Protection sites etc. I will probably look for an older cat. My husband so loved war history also, he was so interested in it, and my middle son especially used to sit with my Dad (who lived till he was 90 years old) when he was living, to hear his stories when he was at the Battle of Monte Cassino in Italy. He tells me things I never knew. You don't realise in WW1 either what these young men went through so many never returning home . Have a good Sunday Ray, have had the mad jumpy arms and legs keeping me awake most of the night so it will be a quiet day here. Many thanks for being in touch God Bless, Carol x
Good morning Lisa, apart from my heart meds I take morphine capsules 20mg twice a day, Pregabalin 50mg twice a day, and Duloxetine 60mg once a day, the Pregabalin has made my stomach bloated, I've never had a bloated stomach. If I miss a dose of Duloetine I get head whizzes and feel very unbalanced, I can as well take paracetamol up to four times a day if I need to, I have been on other meds in the past but had little effect, I'm just reducing the morphine and Pregabalin today in preparation for Low Dose Naltrexone meds in 3 weeks hopefully.
I'll be commenting on here daily of its usage, I'm hoping it eases the pain and resets my brain into a better mood.
I see there's lots of various meds taken for Fibro but mainly there the same, painkillers and antidepressants,
Yes thank you for sharing! I didn't realize you haven't started on Naltrexone yet. Except for morphine and heart meds, I have tried all other meds you are on but only one at a time. Unfortunately they didn't work for me well enough to stay on. I am glad this combo is helping you and hopefully Naltrexone will help reduce dose of some of them while helping you feel better.
Also, Naltrexone for me had no side effect at all. Unfortunately the effectiveness on pain was marginal. I would say it is definitely worth trying it for you, just make sure you stay on long enough to determine how effective it is.
did you get colourful dreams Lisa? that was one of the trial side effects beyond the normal rate of nausea as in controls. By colourful it was vivid colour rather than far flung holidays
I'd be interested to know how you go on. I've had Fibro for many years and the last 3 years, it has taken over my life. I also have COPD and UTCD an autoimmune disease causing arthritis pain.
Hiya Casper,Loved the film, sorry to hear you've had this dreaded illness for a long time, I never thought in a million years such thing existed let alone have it myself, it's totally rocked my world as I knew it !!!
I'm actually having the consultation a week today on the 6th April and hopefully get started on the LDN Low Dose Naltrexone, I'm having a crash course of withdrawing from morphine at the moment to be able to start asap on LDN.
I will post my findings on the consultation and the following steps so other people may consider this route of medication, I've looked up so many treatments to find a solution to my Fibro but nothing works, then it gets depressing to read all the stories other people post with negativity, so I'm hoping after looking into positive outlooks that I may be able to post positive news on here regarding some good outcome on this medication.
Hope I can give you some hope in the next few weeks and it would be a delight to do so 👍🏻😊
LOW DOSE NALTREXONE CONSULTATION RESULT 6th APRIL 2021
Hello all who may be following this post, as arranged with Dicksons of Glasgow Club 158 I think ? I had a consultation booked for today to discuss LDN prescription for Fibromyalgia and on time a gentleman called Gordon introduced himself, he went on to discuss my health issues and medication which I had informed him off earlier in the booking procedure, he seemed genuinely alarmed at how many issues I have had to combat in the past 6yrs with an ongoing issues with COPD and Pneumoconiosis greatly affecting my lungs.
After around a 20 minute chat with deep passion and sincerity in his words said in his opinion the LDN treatment for Fibromyalgia wouldn't be beneficial to me due to the complicated ongoing health and medication that I'm undertaking at this time, he clearly knew his profession and stated I must see my GP for referral to respiratory for further investigations to my breathing issues, I stated since my booking of this appointment that only last week I had to contact my GP as my breathing was worse, during my surgery appointment the 1st in a year due to covid it was found my blood oxygen saturation level had dropped drastically to which would be causing acidic levels to rise in my muscle structure causing aches and soreness, I have been referred the respiratory as urgent and awaiting an appointment.
The consultation ended with Gordon wishing me well for the future and there was no charge.
Albeit disappointed at not finding the answer to Fibromyalgia I was extremely greatful for his professionalism and honesty in his findings, a very rare opportunity to get from a business these days without having to pay charges.
I would highly recommend their services to those who may wish to have the opportunity to try Low Dose Naltrexone if suitable.
This Pandemic has been horrible for so many people and the loss of life is heartbreaking, but it gave me, like you , the excuse of rest. Not feeling guilty about not doing and pushing to appear active and motivated. We give ourselves a hard time, don't we. Good luck with your treatment. I am investigating herbs and supplements. Magnesium is helping me with sleep and some smaller muscle aches.
Hi, I see this is an older thread but was wondering how did it work out for you with the LDN? I’m just getting used to how the forums work so sorry if I have missed your follow up thread. Thanks x
Hello Naylee,Unfortunately I was unable to use LDN due to my heart condition, I have since found that I had sleep apnea which causes my oxygen level to fall low, after obtaining a C PAP machine from hospital my aches and pains are virtually gone, so it seems FM is very much linked to poor sleep.
Thanks for your reply xx I agree sleep plays a big part. I’m an insomniac and exhausted all day and Wide awake all night. I’m happy to hear you have less pains xx
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