Hi, I received a diagnosis of fibro 12 days ago and have been too angry & upset to even consider what this means, other than a future of being dismissed by doctors. I shall probably have a lot of questions for you all over the coming weeks (or months!) but the first one I wanted to ask was is there anything the NHS, or a doctor, has given you that ACTUALLY helps?
I'm not dead keen on taking medication, but I've found this diagnosis has really dragged me down, and it's not like I was 'up' to start with! I see that the med that was recommended to me (Duloxetine? A name like that!) is an antidepressant and I've tried a few of those, both SSRIs and the amitriptyline variety (good old 'fibro fog' is stopping me remembering the proper name for those), but didn't like the side effects. I don't want to be doped, dry-mouthed and gaining weight. I can't afford to gain weight!
If anyone has been given anything by a doctor that actually HELPS I'd love to hear from you. I am particularly plagued by constant pain (in my back, ankles & feet) and have tremendous problems with fatigue. I wasn't diagnosed with CFS, but afterwards, when I started to think about it, I suspect I probably have that along with my fibro', although how anyone can be sure, given the level of fatigue that goes with pain anyway, I do not know.
Anyway, I'd be glad to hear from anyone with any practical help. I realise I've lost all hope with this diagnosis and I need something constructive to try and dig me out this hole. Right now, I never want to go near another doctor, but I need to try and help myself somehow or I'll just go right under.
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Chancery
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By the sounds of it what worked for me isn’t what you want to hear, lol, but In the first year after diagnosis NHS gave me a mix of counselling, SSRI and pregabalin together. really helped me get back on my feet. The combo was more effective that one alone. I’m no fan of the drugs but I was in a pretty awful place and they did help me see about a 10-15% improvement over a 12 month period.
The effects are starting to wane now so time to re-evaluate but at the time it got me through some bad times
Thanks, Grumpy, I should have mentioned he also (sort of!) diagnosed me with Mast Cell Activation Disorder at the same time, which basically means, when it comes to drugs, that I'm more likely to have an adverse reaction to them than not, hence my reticence to take them. I certainly wouldn't be in a rush to take any anticonvulsant because I've used them before (for trigeminal neuralgia) and I had a (very slow) allergic reaction to them. I could use them, if push came to shove, but I don't think the side effects would be worth it. Opioids & NSAIDs are out becasue I'm sensitive to both. MCAD - is a lot of fun when it comes to meds!
Can I ask what kind of counseling you got? I saw my doc for depression/anxiety before Covid struck and I was told I had to 'self-refer'. In other words, find my own counsellor and pay for it myself, so no help there. It was drugs or nothing. I chose nothing. Probably one of the reasons why I now have this fibro; struggling with things on my own. But I'd be very interested to hear what kind of counselling you got.
Hi Chancery and welcome to the club nobody wants to be in. Of course you will be confused and have lots of questions. Be kind to yourself, you will still be grieving for the person you were, to be honest though you are still the same person you were before the label was pinned on you.
Firstly fibro is different for all of course and what works for one person may not work for another. I seem to be particularly sensitive to any sort of medication side effect wise so I do not have prescription meds. However there are lots of things that help me and may be of benefit to you.
Diet - particularly important for me. All processsed foods and refined sugars are out. On better days I will batch cook and freeze meals ready for those not so good days. Obviously I'm human (some would dispute that ) and I fall off the wagon and pay for it the following day.
Pacing yourself - on better days don't go bonkers and do all those things you haven't been able to do on the bad days. Set yourself a limit 10-15 minutes and then rest.
Learn that little phrase "no" when people ask you to do things you know will leave you shattered and possibly in a flare. Now that's not to say that some things aren't worth the payback of a flare - they absolutely are. You have to live your life not purely exist.
Biofreeze Gel - my life saver for those muscle aches.
Epsom Salts - another live saver. Soak in a bath of epsom salts again for those muscle pains, or you can use magnesium sprays.
Tens machine - again for pain - works for me quite well.
Wheat bags/hot water bottles - again for the aches and pains and generally for making us feel cosy.
Weighted blanket - new idea but certainly helps me with the insomnia - not a cure all but certainly helps.
CBT - works for some - I tried it but results were not particularly good for me.
Chiropractor - massage and manipulation works for me with the osteoarthritis and fibro but doesn't work for everyone.
Hypnotherapy again works for me but not everyone's cup of tea.
Won't write any more as don't want to overload you so early on. Feel free to ask any questions and no question to silly to ask, as you can bet someone has asked it before
Many thanks for all that, Dinkie. Some would be out, like a bath, because they won't install one for me (I tried previously but was told having a walk-in shower is the standard for amenity housing and that was it), which is a shame, because it would be a great help. But can I ask you about a couple of the others? Biofreeze Gel. Does that have NSAIDs in it, like Voltarol? I can't use those because they give me really severe reactions, but if it's something relatively innocuous that might be worth trying. And weighted blankets - what are those? And how do they help? Lastly, CBT and massage - are either of those available on the NHS, do you know, or are you footing the bill for them yourself?
Biofreeze is natural products I’ve very sensitive skin and I’m fine with it. My chiropractor uses it after a treatment. Google weighted blankets they seem to have a calming effect - have to be careful to get correct weight for your size. Often used for autistic children. My son bought be one as a present. They are weighted with either beads or sand.
Have you had your cut D levels checked as often low in fibro folk and low levels affect muscles and cause aches and pains.
I use xmas and birthday money for hypnotherapy as not available on nhs here same with chiropractor. I did get physio but not as good as chiropractor on nhs.. mindfulness courses are available on nhs in some areas.
Once I get my rheumatologist's report and see what he's actually said to my doctor I think I will definitely try for a pain clinic. I might also try going back to physio (I had it in 2018/19 but found it useless). But I am most intrigued by the weighted blanket. I'm just going to look those up. Thanks for pointing them out to me!
Great, I'll search that too once I've had a look at them online. Maybe poll some opinions of how people have found using them. Thanks again. X
Hi..so sorry that you have this wretched condition to deal with.
The same medication just doesn’t work for everyone, but I was on tramadol and gabapentin, with amitryptaline at night, and regular trips to the Pain Clinic. Then I had physio therapy and a number of sessions with a mental health therapist. Now I’m just on amitryptaline.
I found gentle Pilates and meditation helps a lot. Also I try to keep my weight down, sometimes moving is hard enough without carrying extra pounds around! I do find my mental state affects my condition, so avoiding stress and upset is important, and
Thanks, Peach. Can I ask you about the pain clinic? Were you referred there by your GP? Likewise, the mental health therapist? And I agree with you on the weight issues. I've been aware of that for a long time, but as you know weight loss is not easy to master. You can go on a diet, lose it, then just regain it all again. I've done that SO many times I've permanently altered my metabolism and now weight loss is like pulling teeth, except less fun. However, I have overhauled my diet, have managed to lose half a stone and am working constantly to improve it, but I think I can fairly say, hand on heart, it's not a cure-all either. It's helped some aspects, but things like my pain, fatigue and general aches & pains have not been altered. Depressing, but true. Maybe with further weights loss they might get better, but like I say, weight loss is not easy for a 63 year-old who has spent her life dieting!
Hi, I know weight control isn’t easy..or a cure-all..but every little helps! It makes me feel better about myself too. And I can certainly do with a self esteem boost sometimes!
I went to the pain clinic via the GP. Then the Clinic organised the therapist.
I was lucky to get quite a bit of support in the beginning. The GP also organised the physio and then the physio sent me to a group Pilates class run by the physios.
Once I was stabilised I was rather left to it. And I decided to come off the medication myself. Now I can generally manage my condition so I haven’t looked for further help.
Thanks, Peach - that sounds like the pain clinic might be the best route to pursue. It certainly sounds the most appealing. Once my doc has heard from the rheumatologist and I've seen what he's actually said/recommended, I think I'll pursue the pain clinic.
Hi. As far as doctors go, no. But my number one is magnesium, so I'd start there. Like you, can't tolerate much, so I use Better You flakes in bath or footbath and sensitive oil spray, in evenings. We've talked about Small Fibre Neuropathy and COMT and histamine and as oestrogen/histamine(Mast Cells)/neurotransmitters(COMT)/thyroid interract to cause or exacerbate pain, all of those are worth more investigation when you are ready. (You may find this interesting chronicfatiguediagnosis.com....
Hi Bookish! Coincidentally, I have magnesium salts, which I use for my feet (no bath, I'm afraid), and I did take a supplement earlier in the year, before Fibro' was even thought of, but I can't say I noticed them helping. What is the sensitive oil spray though? I've not encountered that. How do you use it?
I was (sort of) diagnosed with Mast cell Activation Disorder. I'm still awaiting his report being sent to my doc (chased them for it today but they still don't have it) along with the X-ray report, so I don't know whether he's going to give me that diagnosis or not, but I'm 80% sure I've got the fibro' diagnosis, since I didn't bring it up (on good advice from this forum), he just shoved a leaflet at me and when I asked him flat out - because I was pretty confused by then - if he thought I had fibro' he nodded his head, so I think I'm stuck with it! In fairness, I fit it so well I could be a poster girl for it, but it's still depressing. I was hoping for something concrete with a concrete treatment, and preferably not a lot of doubt on its validity from the medical profession. But what you want isn't what you get, eh?
Hiya, the spray is just magnesium in a bottle and I use the sensitive skin one. It is very thin so best used over or in shower etc as a bit like water. I use it on forearms generally or dab (not spray directly!) on temples for headache or wherever is hurting more than normal. I use some form of magnesium every night and this is easy when you don't want to faff about.
Histamine really looks like it is a big part of this puzzle. How do they try to diagnose MCAD, and who does it? I know what you mean. I've been hoping to find 'someone who knows' for 20 years since I got my very dubious Repetitive Strain diagnosis, but just get more odd, wet-concrete at best, opinions. I'm hoping that the nice Neurologist who found the Small Fibre is going to be well informed about COMT and histamine!
Thanks for the spray info, might try that out on my back and see if it helps. With the mast cell issue he went over the symptoms with me (and I've got all of them, like fibro') and told me there was no way of testing for it and no treatment, other than antihistamines, but he did seem to think it was my probable issue. Again, I didn't bring it up. In fact I said to him that at the time of the appointment being made in 2019 I thought it had been a possibility because of my year of rashes but I hadn't had the rashes in 2020 so I had dismissed it, but he seemed to think it was the problem, or one half of it. But like I say, we'll see if he includes it in the formal diagnosis. If he doesn't, I can't imagine I'll be able to convince any doc to take it seriously.
Perversely, I haven't eaten chocolate in months (maybe 6 or more) and I had some a few days ago, just the brownie chunks and topping in ice cream, and after eating it 2 days running, on the third day I was right back to 'cystitis' pain (constantly sore, irritated urethra) which I'd had for forever before cleaning my diet up.
Of course, there was sugar in there too, and it could be the culprit, but I don't think so. I am super, super sensitive to chocolate (flushing, sneezing, skin itching, acid reflux and now, I've discovered, probably urinary pain), so I'm beginning to think my original theory, and perhaps his diagnosis, isn't far off after all.
Thanks, Flysolo - poor you, getting Covid then landing up with Fibro' too!
I tried a couple of years back to get CBD oil on the NHS but with no luck. Even MS patients and epileptics were struggling to be be prescribed it, and it really does help them. At the time I wanted it for my trigeminal neuralgia because I knew a lot of people in the US who were using medicinal marijuana to treat that, with great success. It seems to be very good with nerve pain in general. Roll on them legalising it in the UK, preferably before we're all dead! But I shall go and check CBD oil out and maybe treat myself to some, if I can find an affordable one. Can't hurt....
I suspect you're right, Maggie. I tried some back in 2018 and it did nothing for me, but it was the cheapest one I could find off ebay, so that probably wasn't the best experiment!
The NHS website pages on Fibromyalgia are a good place to start reading about treatment options nhs.uk/conditions/fibromyal... A referral to a Pain Management Clinic would give you access to the multi-disciplinary team that can offer a variety of medication, lifestyle and other options to manage this lifelong condition.
Thanks, Magic, and yes, after talking to a couple of people on here I think the pain clinic sounds as close to perfect as I can get for a way into trying some things out.
Hi sorry to hear that I was only diagnoseda little while ago afte lots of testsI Ive tried lots of different medications had accupuncture injections not much help Im currently waiting for a lindocaine infusion from pain clinic zi understand your pain I didn't like taking amatrypaline as I they made me feel groggy and I gained weight I now take dihdrocodeine and paracetamol also my doctor referred me to physio and he sent me an app with specific exercises for my leg and hips where pain has been bad at the moment and I must admit im doing them every day and they do seem to help I sympathise with you as it really gets you down this horrible condition hope this helps take care xx
Hi Mille, no I didn't like antidepressants either, for exactly the same reasons as you. I can't use codeine drugs, unfortunately - they're great painkillers! - but I do love the sound of a lidocaine injection. One of those numbing my back feels potentially fabulous. I haven't had a pain-free back since I took steroids briefly in 2018. They were great, even although they led to a load of problems later!
Fibro is essentially CFS but with added pain. Some areas run Fibro courses under Rheumatoid docs usually. They mostly teach about pacing an non medication things such as hydrotherapy, heat , mindfulness.
I take venaflaxine and dont find this too bad but everyone is different. Could try gabapentin but all these meds have similar side effects.
You need to ask for either referral to pain clinic or Rheumatoid clinic for help.
That was my thought exactly, Jules. I wouldn't be at all surprised if somewhere down the line research shows that CFS is the forerunner for fibro, or that fibro is the next stage, or a worse version of, CFS. They seem so alike to me I wonder how any doc can tell them apart.
Hydrotherapy sounds nice. I wonder if the NHS does that? And yes, I am definitely going to ask for a pain clinic referral if the report ever comes through form the hospital!
The course I attended had both cfs abd fibro and the 2 are classed as the same category. The doctor said that pain killers usually don't help but each person is different. I found Nsaids worked but then I got stomach ulcers so now I'm just on co codamol. Hot baths are good i had one of those cheap whirlpool things. Sadly due to arthritis can no longer get in one.
Yes, I'd give anything for a nice bath, but my last two houses haven't had one. I've actually considered paying myself to have a bath installed here, if the council will give permission. Might get a quote for that!
I'm on Duloxetine and it's made a world of difference😊 it takes a bit of getting used too, I took 20mgs in the morning for a month but still had pain at night so now I take one in the evenings as well. I am a very happy bunny after years of agony. I still have Diclofenic for when I have overdone things, so that's probably two a week. It's trial and error but worth a try. I was a nurse so I know if you don't get on top of pain it will drag you down and feel worse😊
At last, I've met someone who takes Duloxetine! That was the drug he recommended to me, and arthritis UK seems to recommend it too. How have you found the side effects? Any nausea or migraine/headaches? How dopey does it make you? I found with the antidepressants that they made me really sleepy, particularly in the mornings, and I have enough problems with sleep disorders as it is. What were your worst side effects, assuming you had any?
I just felt a little light headed for the first few days and a lack of appetite, headaches none at all and no migraine since starting the tabs. You may feel rough for the first couple of weeks, some people do, I didn't. If you give them a go please put up with the side affect for a couple of weeks if you can. After 3days my sleeping pattern was much better and now after 6 month's I only have maybe two or three bad nights a month. It's easier for me as I am medically retired so if I'm awake till 3 or 4 o'clock I read and listen to music. I slept for an hour this afternoon where it used to be 4 or 5 hours!!! I've done some weeding, washing and cleaned the bathroom😀😀 I hope very much that they suit you, nothing else has worked for me and pacing myself was no good at all as there is no rhyme or reason to this illness. If you work ask the doc for a sick note for the first week to see how you do. Any question don't hesitate to ask😊
Thank you so much for that. If I ever get the damn report form the hospital I think I shall screw my courage to the sticking point and try them out. I might want to get in touch with you again if I need to ask questions about side effects - will that be okay?
I wish that was true, Mr Bee, because then it would be SO easy to give it up, but I've been on a sugar-free diet for about 3 months now and I'm afraid I still have plenty of brainless staring at things, trying to remember what I went into a room for, problems in shops dealing with tills, trying to give the bus driver my credit card instead of my bus pass, and sometimes substantial periods of time staring at the page utterly unable to remember an everyday word.
I'm sure sugar makes everything worse, but it's definitely not solely responsible for my exhausted inability to dredge stuff out my brain.
Yeah suppose so. What's the point of questions if were all different then eh? What works for one will not help another. Then, then the forum is pretty useless in that concept. So, what now, we just all listen to each others, problems and go Ho hum sorry for the pain etc...
Suagr is what leaks into your blood thus effectively giving you the Fog. It passes the brain barrier which it's not supposed to. Try looking up leaky gut syndrome and working from there. Research is what i've done for the last 18 years and have more knowledge about Fybromyalgia than most!
But, no-one will listen because we have all become sceptical! Listen or don't that's entirely up to you! But, I will tell everyone one thing... There's never going to be a cure.
desquinnPartnerVolunteerFMAUK Trustee• in reply to
Sorry but wishing or being sure you are right is not the same as being right. WE do not understand everything about fibro but for some sugar may well be a trigger. But that's not the same as saying sugar is a trigger for everyone with fibro.
Declaring absolutes about fibro is not sensible when we are still learning so much about fibro.
The foreign helps people five what helped someone and that this MAY help them.
I reiterate it's sugar! Eventually you'll all learn. To find out all you have to do is cut it out and do 2 miles a day walk. No fogging will occur after several months. Your choice to do or not. Research will backup the research...
desquinnPartnerVolunteerFMAUK Trustee• in reply to
Its great that it is for you but it is not for everyone. one drug does not work for everyone, activity does not work from everyone, cbt, cbd, etc all have silos of people that find them a positive influence and also others that do not find them helpful or further unhelpful.
The research so far (mayo clinic for one) says that while there are anecdotal stories of people excluding, including or changined thier diet there is no research that proves that diet can treat fibro,
What FMA UK says is that diet is something you can control and effect change, a healthy diet is healthier irrespective of fibro but this path leads to your fibro being better if your general health is better, and that activity for the same reasons is good or you.
But we would not say it is the answer for everyone as there is no research for that.
I agree with your anti-sugar position, Mr Bee - there's no ailment that sugar ever improved! - but it seems likely that fibro' is triggered by some kind of trauma, either physical, like an infection, or emotional, like a divorce, major depression etc. There is research showing that there is a much higher incidence of childhood abuse in Fibro' sufferers, for example, so I think given these things, that something 'causes' fibro, and it's unlikely to be sugar. I think it is VERY possible that lots of people who are depressed/sore/struggling with trauma USE sugar to try and self-medicate and that that definitely, especially in the long term, adds to brain fog, but I doubt that sugar actually CAUSES it. If it did, it would be like diabetes, simply give up sugar and carbs, lose weight, and - BINGO! - no more fibro. But that obviously does not happen, which means that fibro (or its brain fog) is NOT being caused by sugar. Made worse, I'm sure, but caused, no.
I understand your thoughts. But, I personally had little issue with life, in fact borderline contentment with life until I caught Yuppie flu. 1987 August when all the Yuppies in London had it I caught it 2 months later. The issue of trauma is nearly every human being experiences trauma and therefore should be discounted as many of those yuppies went on to develop varying issues like CFS. It’s banded about that everyone has had a trauma, it’s just an easy out.
On Sugar, it’s seen to be believed, 2miles walk per day plus sugar free including natural sugars disposed of Fibro fog. Even eyesight returns to 20/20 vision.
I can't agree that we can discount trauma, for the simple reason that some people have much MORE trauma, worse trauma or are unsupported through traumas than others. It's not just a case of fall off your bike, develop fibro'. It's more of the 'lose your partner of sixty years' or have your child die or be violently raped variety. Not everybody experiences those traumas, plus even when they do, if they have a good support network, and things like a stable family life, it makes a HUGE difference to how they are able to deal with that trauma.
The research that shows many fibro' sufferers have had 'worse' childhoods, with more abuse, is a good indicator that people whose backgrounds already have more trauma, and who possibly don't have good family support or even know how to reach out for support (neglected and abused children often don't grow up expecting help) are bound to struggle with later life traumas, depression etc.
While I think I started showing signs of this in my 40s, it didn't really get vicious till I split from my partner of 45 years and found myself completely alone, without friends or family. My depression, anxiety and loneliness skyrocketed and my health deteriorated commensurately. So possibly although the severe strep throat I experienced in my 40's maybe triggered this, it didn't really fully hit till about 20 years later when I experienced a psychological trauma.
Obviously no two people's personal histories will be the same, but I think 'stress', whatever the stressant may be, probably plays a huge part in fibro', either starting it up, or in making it flare.
You mean Satan. It’s his world after all. Poor old Jehovah is busy attending other things but Jesus is keeping an eye on the place until Satan’s done enough to wreck it all. Then Jesus will come down and sort everything. So the bible says.
Oh, no, I mean God. He has a warped sense of humour. It's probably from living for millennia - the boredom's got to him and sending plagues, pestilence and disaster to humans is the only thing that keeps him amused.
Impossible? He does Nothing to harm humans! The last person he afflicted was well over 2 thousand years ago. Your being misled. No surprise as nearly all of the human race is!
That's interesting. I'm very sensitive to spice. I didn't do it intentionally but over the last three years I've pretty much stopped eating it. I get terrible flushing with chili, plus the usual suspects of a runny gut and reflux of course!
Hah! We're spice twins! I love paprika but as early as my twenties I was having quite severe reactions to it. We had to stop cooking with it eventually. I never (intentionally) eat it now. But I have suspected Mast Cell Activation Disorder. Do you have some kind of histamine/reactive disorder yourself?
Yep! Antihistamines regular. My skin used to be dark purple. Now I just got severe irritations. But, I have found a way to control all of these problems but again due to memory issues and uncontrollable overeating because of continuously unhappy with how I feel about life and other issues memory takes a back seat! Therefore control is pathetic. And again but, I do have sound well worked out answers to this illness after 18 years of research.
My biggest problem in life is actually getting people to listen. In that event I give up! Because people are either over sceptical or completely ignorant. Either way I can’t win!
I meant to ask you, did you give up eating fruit too, as part of your sugar-free regime? I've tried to do that MANY times, but never managed to see it through. The only time I've managed to have zero sugars in my diet (excluding things like carrots & peas) was in hospital some years back where I was on a very low fat diet so didn't have dessert so didn't eat any fruit! I did get used to it after a while.
You say also you were an overeater. I sympathize, I've struggled with Binge Eating Disorder for many years but have recently managed to get more of a handle on it. Like all 'addicts' though you can never say it won't come back or jump out and surprise you in the right 'bad' circumstances. Did you lose weight as part of your sugar-free regime too? I imagine that helped a lot with your health, if you did. Can I ask what sort of weight loss you had/have and whether you've reintroduced fruit or do you live without it?
Got my diagnosis 15/20 yrs ago. I, unlike you, felt relief that l finally had a diagnosis, and that it wasn't something in my imagination. I wasn't going mad. Amytriptilene did nothing to help me so stopped taking it. Helps some but not all. I have cronies disease so unable to take most meds. Please don't dismiss whatever you are prescribed, try it and see. I have been taking Pregablin for a few years now. It helps the pain sometimes. Only rest helps the fatigue so you have to try and do so when at it's worst. I have missed out on many nice things, but also done many nice things. Please, do not give up hope. Although no cure at the moment, one day maybe. Do what you can when you can. It has a tendency to get you anywhere in the body at anytime. Try not to let it get you down, and definitely take the muscle relaxants offered. I took one at bedtime, so didn't feel any sleepy reaction by the morning. And carried on working until retired at 66. Life still goes on, just not always the way we would like it. Let your friends and family know what you have been diagnosed with, they will understand. I wish you luck in all you do, but please don't let it get you down so. There are always people on this site will understand so keep talking.
Thanks, Miss Molly. I must admit I fancied muscle relaxants. I think because my muscles go into spasms a lot and I have to twist myself into odd shapes to try and get them to unlock. They feel like they are overreacting, if that doesn't sound mad.
I've read a couple of places now that one of the theories about fibro' is that the body's pain sensors overreact to normal stimuli and that felt very right to me. I'd noticed - oh, quite a while back, certainly 2-3 years - that if I stubbed my toe or banged something not only did I bruise easier but it actually hurt more than it used to. I put it down to old age, but I'm thinking now it's actually increased sensitivity to pain, which seems to be a trademark of fibro'. I've found myself crying like a child lots of times when I hurt myself and found it really upsetting, and lectured myself for being 'too stressed' and not 'getting a grip'. But I suspect now that I am actually experiencing more pain and it's not an overreaction at all. So yes, muscle relaxants definitely sound like something I'd like to try.
Good, and whatever, you are not over reacting to pain, it is real so take and try whatever can. Unfortunately with crones,l can't take anti inflammatory relief, Tramadol works well to help pain, but spaces me out. But get that as well from pain in spine from chronic arthritis without meds lol. Remember you are not on your own in this and hard and frustrating as it is there are people here to talk to. Perhaps there is a fibro group in your area you could join. Meeting up with others in same situation may help. Although l was told about this group by a nurse several years ago, but only joined during 'lockdown' so l hope you find it helpful. Always someone here to talk to. Take care and message whenever you like. Best regards x
i was devastated when i had my diagnosis almost 3 years ago . I had a feeling and had all the symptoms 9 years ago i went to my gp who poopooed the idea of fm it doesnt exist its made up, stop researching you have degenerative discs and osteoarthritis go home. lose weight deal with it . When i moved to a new area my new gp is good referred me to rheum and i was told i have fm i cried it made me feel a fraud the pain is all in my head im mad not ill . To be fair the rheumatoligist was angry at what my old gp said tried to reassure me that it is an illness and i do have it but there is not much they can do to help .
over the years i have tried all the legal drugs the GP can prescribe for pain but nothing worked and the side effects of those drugs were much worse than the pain . A locum GP advised me to try aqua lessons I went 3 times a week for a year untill lockdown and tai chi classes once a week It really helped in water exercise is so much easier you only do as much as you can no one judges you tia chi can be done sitting or standing again only as much as you can do no pressure . Since lockdown and having caught covid off my son who works in ITU i am so much worse the lack of exercise and the long term side effects of covid i feel dreadful . The exercises are so simple but they worked for me better than any analgesia did thank goodness the pools are open in wales this week and classes starting back i am not sure how i am going to manage after all these months but i know it works for me so i will be going back . Good luck and welcome to the club no one wants to join
Oh God, poor you, Khaleesee, getting Covid on top of everything else, but at least you survived it! Hopefully, it will have given you some immunity so you won't get struck down with it in winter, when it will be so much worse. And I know what you mean about doctors pooh-poohing anything they haven't thought up themselves. I've even had a doctor once argue with me over giving me simple, cheap rehydration salts (during cystitis, because I got low blood sodium) because she didn't believe they'd help. I explained that it was a doctor who'd first given me them (it was, because I'd had to be hospitalised due to low blood sodium during an attack!) and she grudgingly gave me some. They will, literally, argue over anything if it is not their idea.
Hi Chancery I've been diagnosed with fybro about 2yrs, I take pregablin and had no problems I also take fluxotine for depression amongst other tablets for other ailments, but no side effects and now and again have an energetic day. I hope u get sorted .
Hi Walker, I couldn't get on with Fluxotine at all, but possibly I gave up too soon. I do tend to (over)react to medications (my probable mast cell disorder) so I can get a lot of side effects and feel pretty sh*t, but I think also after years of having drug reactions, some nasty and long-lasting, it's made me very anxious with new drugs, and I don't need more anxiety! But it is very interesting to see the various combos people are using, and good to know there will always be someone else using it so you can ask for advice and support.
Hi welcome to the club I am five years in from diagnosis I am taking duloxatine for 2 yrs now it has brought some control to good and bad days . I've tried amitriptyline gabapentin tramadol all which proved not to be long term solutions to pain etc. I would not of got through the last five years without heat pads and pilates classes .i found pain management classes a great help and physio (tens machine) a help.
Thanks, Cas, they're all good to know. Do you know if physio depts still lend out TENS machines? I'm sure I read somewhere that you could 'hire' one from them for a while. Was that how you got yours? I'd like to try one to make sure it works for me, and that I can cope with being 'electrocuted' (!) before I paid out for one.
Hi chancery I went to private physio to have treatment first and have since brought a tens pen called pain gone.Its portable and you can press pen into areas of body that hurt .For me is something I use before having to resort to taking drugs x
Hi Chancery, It has been a while since I have been on here but I received a reply to one of my other questions and then I got side tracked as usual. I too have Fibro for about 15 years now. I was wondering how you were diagnosed? Did the doc just go by your symptoms? The reason I as is because I just read an article that they now have a test for checking if you have it. I am in the US and that so far the testing is a new thing. Maybe ask your doctor about it if he didn't give you the blood test. Worth a try just to make sure that it is what you really have before they start wanting to prescribe lots of meds. I am not a fan of all that they gave me as my system is sensitive to medication. You will just have to find what works for you as most of us have found out. Lots of good suggestions on here! Below is what I copied from the FM Test site:
......Groundbreaking blood test detects Fibromyalgia. New research finds an accurate way of diagnosing Fibromyalgia and differentiating it from other related conditions. Using blood samples and innovative techniques, scientists have detected a “molecular fingerprint” that is unique to the condition.
The FM/a Test analyzes your immune system's white blood cells for distinct protein patterns unique to FM and tells you for sure if you have the disease. It's the only FDA-compliant blood test for diagnosing Fibromyalgia.
Good Luck and be nice to yourself and try not to stress, which only adds to the problem we face. Hard to do in this day and age!
Hi Health, that's amazing, if they have an accurate test. My guess is if it's only newly developed in the US it will be an age and a half before they have it in the UK. I did have blood tests on the day, but it would be too much to hope for that a test like this was done. I imagine the rheumatologist was just doing ANA testing and the like, the usual basic tests rheumy's do! I haven't seen the report yet, it still hasn't been sent to my doc, but the rheumy just did loads of physical testing (stand up, stretch, bend over, examined my nails and feet - I think looking for arthritis) and then, quite out of the blue, pushed a fibromyalgia leaflet at me and recommended a drug. I had to ask him if he thought I had fibro' and he nodded. But, like I say, I haven't seen a report yet, so I can't be absolutely sure what he's said in that, or if I have a formal diagnosis, but he seemed to just write me off with it, no further appointments or anything, so it seems likely that's what I've been given.
Do you have a link you could give me for the blood test site? I'd love to go and read up on it.
Awww, that's really sweet of you, Bookish, thank you. I think I remember saying to you somewhere along the line that we were psychically connected, health-wise. Definitely true anyway, as no, not doing well; I think your spidey-senses must have picked it up! Fallen into a deep bog made up of lack of sleep, apathy and what's-the-point struggling. I hate these. I fall in and cannot see the point in even cleaning my house, never mind doing something more challenging. I struggle to clean me! I know it's chiefly tiredness (I've gone, in the course of a few days, from getting up at 5 pm to getting up - not willingly - at 5am. Very un-fun.) Had 4 hours sleep two days running now and sitting here struggling to keep my eyes open so that I can stay awake till at least 11pm and try and get back into at least an approximation of a sleep schedule. I'll never understand how you can be exhausted and yet your brain will still wake you up after only 4 hours sleep and not let you get back to sleep again!
Hello. Lovely to hear from you but really sorry that you are struggling so (and I think we must be connected because I am feeling a bit the same and struggling with low mood and poor sleep and don't really know why.) You describe the bog so well. When I 'd not long had my thyroid op, the first winter after, I barely got up - wandered around in pjs and thick dressing gown, freezing and flat as a pancake mood wise, no energy to wash, dress, cook and I thought that I was past that now (although the house is a disaster area). Partly I think it is the time of year. It is getting chilly already and I find winter really hard, so dread it every year. I'm also wondering about blood sugar. But tiredness, that crushing fatigue that seems to go along with fibro and autoimmune, is so hard to lift yourself out of. 4 hours is nothing like enough, even once, never mind 2 nights running, and we need proper restful sleep. I wish I knew what to suggest and how to help. I shall think you a hug, because we all need more of those, and am going to play some music that I can sing to to while I attempt, slowly, to do some cooking, so you can have a chuckle thinking of me yowling in the kitchen... Keep in touch when you can and maybe tonight we'll both get back to something more normal xx
I know exactly what you mean about the time of year. I struggle with SAD and have done my whole life, even as a child (you'd be forgiven for thinking it was genetic but I'm from a line of Scots & Irish - I should have been bred to be used to poor daylight!). When I noticed my first yellow leaves recently, then saw it was officially the last day of summer, I could have cried. It's dark by half eight now and I find that hard to cope with, especially if I'm on a late rising cycle, which is my norm. I had to give in yesterday and take a nap 'cause I kept falling asleep so I slept for two hours in the late afternoon and it made all the difference. I was able to go to bed at 1 am and was asleep by 2 am and got up just before 10 am, so it was very nearly a decent nights' sleep. I'm going to move mountains now to keep getting up at 10. Given half a chance, my biological clock will slide to 1pm rising and I have to fight it (wo)manfully!
I'd been going to post, asking people about the relationship between depression & fibro' but I'm not up to answering lots of folk at the moment so I haven't bothered, but I'd like to ask you, while it's just you and me, as it were, if you have any thoughts on it. I'm not stupid, and I'd long since figured out that my declining health was probably being 'caused' by grief & loss (from a broken relationship) and the incredible levels of stress it has produced for the past three years, but I feel it's very much a chicken and an egg thing. Did I get sick because I was depressed or did I get depressed becasue I was sick? Being chronically 'ill' all the time is very stressing because you're in pain and tired 24/7. It's not been helped by the fact that I deal with stress by eating, and sugar at that, so my poor body takes a double hammering from the stress itself, then from me incapacitating it by making it deal with a high sugar intake. I know it's wrong for me and I ban it all the time, but as I stop my coping mechanism, my stress escalates. It ends up almost at an equation of 'eat sugar, feel less stressed, but run down from the high sugar intake' or 'go sugar-free and feel better physically but be stressed out my mind with lots of tension pain and psychological misery'. It's the Sophie's Choice of healthcare!
If you struggle with something similar, which do you think comes first - depression or ill-health? Do you find the euphemistic 'low mood' makes your pains worse, or is it vice versa? I struggled with depression and ill-health before I finally declared an end to my relationship (that's a whole other discussion!) but it's been snarled up together for so long now that I genuinely cannot tell what came first. I find it difficult to deal with because of that, since I don't know which is the most important issue to tackle. Is one of them causative - if so, which one? Ah... if I could answer that I'd be winning.
I am glad that you managed both a nap and a bit more sleep. SAD must be difficult, especially over so many years. I wasn't consciously bothered by light and bad weather etc as far as I can remember until moving north to Lancashire in 1997 and then starting to get more health problems from around 2000. I love the autumn colours on a bright blue sky day like today (and even though I didn't do much better for sleep my mood is way different because of that blue) and even like to look at the snow, but because I feel so unsteady on my feet and ill, the hills here make me feel trapped and out of control in snow and ice, and I feel so cold, Raynaud's etc so just a battle to get through to spring. Only high point is my loved collection of old christmas tree decorations, but when they come down, I weep.
Such a great question (and yet again, my twin, sugar was (and possibly still is) my coping mechanism. Bread, biscuits and fruit scones were my main weaknesses but for years especially through the worst of my marriage, I simply ate sugar - lots of hot, strong, sweet tea and teaspoons of the stuff straight from the sugar bowl. Now I eat fruit and probably too much, but that feels like a better option.
I was treated for 'depression' after an ' injury' in 2000, but was living with a chronically depressed partner and the two looked very different to me. What I wasn't considering was that I had been building up to what I had jokingly referred to as 'some kind of breakdown' - expecting it at some point due to the unrelenting stress but not being able to see my way clear to doing something to prevent it - for some years before that. In 2000 I was busily telling myself that I was depressed because I was in pain and to be fair, GP and Pain Management Clinic seemed to say the same, although the Pain Management Psychologist thought I'd not really get better if I stayed with partner (I left several years later. )
I know that COMT is only one of the possible genetic vulnerabilities associated with Fibro, but as COMT plays such a big part in our neurotransmitter function/clearance I suspect that, knowing now that I have slow COMT and therefore a predisposition for high neurotransmitters and that that can result in pain (like Fibro), anxiety, poor stress handling (plus excess sweating and others) that the genetics may play a bigger role than expected. All of us have variants and they interract, so it isn't a clear picture - 'have this SNP, take this to fix it' is just too simplistic - but COMT puts pressure on MTHFR which messes with your folate cycle and B12 and low B12 is classic depression territory. I've had the pain in all the trigger point places since I was about 12 so suspect that whatever kicked those genes into activation, it did it quite early, so my stress and anxiety and depression vulnerabilities probably grew right alongside my Fibro pain. And that timing takes me on to the other main issue, as I see it, which is oestrogen. Although not everyone experiences it, higher oestrogen tends to be depressive, and COMT (and MTHFR) mess with your ability to metabolise and get rid of used oestrogen effectively. My overall symptoms (pain, mood, depression, migraines etc) started at puberty, got worse in lots of ways when I tried the pill and are rife just now with peri-semi-menopause type stuff. Sugar messes with your hormone balance and out of whack hormones affect ability to regulate blood sugar, so we go round and round, like with the low mood-more pain-low mood.
So sadly I don't know the answer either, to which is causative. Someone on one of the other forums said any of us with chronic health issues/autoimmunes etc is like having 36 holes in the roof and you need to patch all of them. I guess we just have to start somewhere. Thinking about all this has made me reach for Micki Rose's book '8 step healing plan, Recovery from Chronic Illness with mind-body medicine' again. I need to read it again and see if I can do some more. I won't say most of the time, but much of the time I am less stressed and depressed and I think partly that is because of things like vagus nerve exercises, tapping, breathing, lots of little changes to how I think about myself and my situation. Generally I try to give myself some time, some peace, be nice when I think about myself rather than constantly self-criticise, and be a bit less hyper-alert for criticism from others. That's the theory anyway! Plus magnesium, which I am convinced has helped a bit too and the B12/folate which have helped me a lot. Small Fibre Neuropathy may also be a part of our Fibro for some of us and that also can be caused/contributed to by B12D as well as toxins/heavy metals (and lots of other things, like Sjogren's), which can also affect us depression-wise. Even gut bacteria play a part.
My gut feeling is that the ill health results in the depression, but that the stress (in it's widest sense) causes the ill health.
Weird that you should say that about moving to Lancashire and noticing a difference. I did that in reverse. I moved to London in my early twenties and was there for 10 years. I noticed it was hotter but wasn't really aware of the light. I moved up to Manchester some years later and still wasn't really aware of the light, but I moved from Morecambe to Orkney shortly after and BOY did I notice the (absence of) light, and heat. HUGE difference in both. I first became aware of SAD then, but I also first became 'ill' then and had big problems with my relationship (partner's 'affair') AND menopause, which was tough. It ALL sort of went downhill from there, which is hardly surprising. Scotland is my home, and I do love it, but I confess I sometimes think about moving South again to see if the light/weather improvement improves me.
And I know what you mean about eating too much fruit. That's my go-to when I ban sugar and I'd been aware for a while that I ate too much of it. I finally made some progress when I stopped compulsively buying fruit just because I was off sugar. I'm lucky I've never been a bread or baked goods person, my sweet relief of choice is ice cream. It used to be chocolate too, despite me not liking the flavour, and it REALLY not agreeing with me, but that was something ese I actually managed to reform. However, my ice cream habit is still well entrenched. I don't think I'll ever not like ice cream! Be great if they could give you a tablet for that.
I need to read up thoroughly on COMT so I can talk intelligently with you about it, but I was struck just looking it up (again!) that it's involved in adrenalin production and it's weird but I've had a problem for many years now (since menopause, maybe a bit earlier) with falling asleep and being woken abruptly minutes later by what I always call 'an adrenalin surge'. I get woken and feel unnerved, like I've had a nightmare, or heard something. I'm hyper-alert and sometimes I get very hot and flush. It's not night sweats, because I don't always get 'the hots' (if only!), the only really consistent part is the jolting awake and the 50/50 chance of it REALLY waking me up and making it hard to get back to sleep. Sometimes, if I get it bad, it will be followed by RLS and sometimes hours of wakefulness, no matter how tired I've been beforehand. I always mention it to docs, but none of them has ever asked me about it, or told me what it might be. I get the strongest feeling they don't have a clue - as usual. I just wondered if it might be related to the COMT issues.
It's very interesting that you had trigger points from SUCH a young age. That has to be unusual? Do you mind me asking if you had a traumatic/abusive childhood? No need for details. If you don't want to talk about it, I completely understand. My own childhood was pretty appalling, in a kind of banal, mediocre way, and I came out of it with phobias, anxieties, and an already disordered gut, plus the starts of an eating disorder and what I now recognise was probably depression. I knew zero about any of this, as a child, and it took me a VERY long time just to acknowledge lots of it and recognise it. Like you, it left me with an inheritance of self-criticizing that I am still very far from 'fixing'. When you've been raised to be 'responsible' for everything (i.e. to blame!) it's so ingrained you don't even know you are criticizing yourself. It's just who you are. But it definitely plays a huge role in depression. You literally become a sin eater for everyone around you, and the self-help culture of thinking positive and 'asking the universe' etc encourages you to beleive you are responsible for everything, which, of course you are NOT. Bad sh*t happens to good people, and you can't control everything that happens in life.
Lastly, I couldn't agree more with your "My gut feeling is that the ill health results in the depression". I had an unusually clear view of that this morning when I got up after another bad night (my 'good night's sleep' didn't last, with my body deciding to wake me at 5 again, then making me sleep in till 11 because my sleep was so fractured and poor quality). When I got up, I was dog tired and staggering about like a drunk (last few days my 'vertigo' has come back with a vengeance; definitely related to poor sleep, I think). I was sitting drinking tea after washing up, and writing in my journal about how I had intended to go to Livingston on the bus today but didn't feel up to it becasue I was so damn tired, but I was upset because my disinclination meant I'd sit on the sofa all day again, and my backside is sore from so much damn sitting, and I realised that the apathy I felt was entirely because of tiredness. It wasn't that I was too depressed to go out, it was that I was too tired. But, of course, you do get upset about spoilt plans and not being able to do the simplest thing so you can feel 'depressed'. I think that's where the confusion comes from, because it's often just a tangle of emotions. I happened to be writing about it, and had been thinking about it a lot recently, so I suddenly got some clarity, at least on today's apathy!
Depression is like addiction, which is probably why compulsive behaviours, like drinking or eating, or even popping too many legit pills, can go along with it. Addicts have a thing where they feel trapped, that their lives are pointless and they'll never be free of whatever hell they find themselves in. I think depression/ill health can have the same effect. If you can't do the most basic things like go for a walk, or go on the bus, then you start thinking 'I'll never get out of this rut' and - bingo! - bona fide depression is right there, waiting for you. That's the problem with vicious cycles - it's not a straight line out of it.
Hi, sorry this will be a short one tonight as we've been out today (working, vaguely) and all a bit out of routine. I cease to function by about now and usually crash out by 8. Tomorrow I will try to make more sense! Some really interesting points that deserve thought and a proper answer, which I'm not capable of formulating tonight.
No, no trauma that could explain it - really quite a normal childhood. Anyway, back to that tomorrow. My sister is in Scotland, near Dundee, but she often seems to get better weather than we do. East coast rather than close(ish) to west coast I guess.
I don't know how much of the jolting awake/anxiety thing is COMT, but it would make sense. In last few (say 4) years, I started to wake usually in the early hours, shaking, with this immense sense of foreboding. Dr Peatfield (have you ever heard of him?) used to describe it as a sense of doom and said it was an adrenal dysfunction sign. Cortisol is lowest in the early hours, all ties in with blood sugar imbalances. I know adrenal fatigue gets a bad press but this was quite interesting adrenalfatigue.org/sleep-di.... I've been taking an adrenal glandular for 3 years, building up very slowly, then recently dropping back a bit, and don't seem to get that particular problem anymore. One of the reasons why I'm not sure that my COMT is actually affecting me now, although I am sure that it was for a long time. COMT is associated with addictive behavior and cravings, but I think that is fast COMT so low dopamine, and mine is (theoretically) slow with high dopamine. But I have other genetic variants that also affect neurotransmitters, like MAO A so the overall picture is confusing to a novice!
I tried listening to some rather odd healing/sleep frequency/vibration music last night and actually slept ok. I suspect it actually had more to do with writing this and talking it through with you, which I am finding really helpful, thank you. It is too early to pass judgement on the music, but if the experiment is regularly reproducible I'll let you know!
Wishing you a peaceful night and some restful sleep and we'll talk more tomorrow x
Yes, adrenal fatigue is an odd one. While it seems every snake oil salesman and his dog claims it for every ailment there is, the medical profession only believe adrenal insufficiency is a problem when it is Addison's Disease. I can't help thinking that no, I imagine it isn't a problem for most people, since the body is good at regulating these things, but nevertheless it can't possibly go from normal to zero with no in-between, which means, by law of averages, there MUST be people who have an insufficiency without having full-blown Addison's. But I've never known how you would treat it anyway, other than trying to mitigate whatever it is that's causing you to frazzle your adrenals. I've never heard of an adrenal glandular - what is that? I assume something you've taken for yourself, rather than been prescribed?
As to depression and the NHS - don't make me laugh. I couldn't even get to see a counsellor - full stop. It was medication or nothing. In the end, after trying a few exhausting drugs, I chose nothing. To say mental health care is inadequate or underfunded is an understatement, and can you imagine how much worse it must have got becasue of Covid? I dread to think how may poor souls have topped themselves. Only the other day there was a police chief who killed himself and he was, literally, having a nervous breakdown with paranoia et al, untreated. Mind you, his (not wishing to be unkind, but it's still true) brainless family let him lock himself away at the bottom of the garden in case he infected his adult children. WTF? Everybody knows that young adults are the least likely to be affected by Covid. Why they let a man prone to depression act on his own depressive impulses, I do not know. The downside of being overly obedient to authority, I suspect. But there must be people struggling everywhere, and there is ZERO support for them, contrary to what they'd have you believe. They always trot out the 'talk to your doctor, don't suffer alone' but doctors don't/won't do anything - chiefly because there is nothing they can do, other than medicate you.
I definitely don't have a B12 issue (now), unless it's a very complex and not-understood one. I've been having B12 injections for years now. I've got them spaced to the standard 12 weeks apart (I used to have them every 4 weeks, but decided to try pushing them out to see how far I can go) but have found that, realistically, I need one every ten weeks before my TN starts zinging again. I don't think it's the vertigo culprit.
I wonder if with your childhood there wasn't trauma, as such, but Childhood Emotional Neglect. It sounds as if, with your dad maybe, that he/they were not catering to your emotional needs. Sometimes if parents don't get their kids it's because they don't know how to, and while they are not being intentionally neglectful, they tend to leave kids on their own with their struggles. I did have actual abuse in my family, some physical and quite a bit of sexual, coming form various sources, but in all honesty my parent's emotional neglect (and some physical neglect) was by far the worst thing to endure, and has had the longest-lasting effect. Neither of my parents could tolerate anxiety or worry of any kind - they didn't have a clue how to deal with it - so they just didn't. In practice, this meant they left me to worry on my own, and deal with everything on my own, so the lasting effect of this has been to do anticipatory worrying (trying to make myself 'secure' by constantly harassing myself with anxious scenarios) along with feeling no-one will help me (and I can't ask for help). I expect to be left alone with my problems and - behold! - it comes to pass.
I think this kind of low-level, and some times high level, stress can, and does, wear everything in your body out. I think your body literally folds under the strain of it. In caveman terms, it's like constantly running away from a sabre-toothed tiger, at all hours of the night and day, without respite, never able to out-run it. That's my own personal theory for how, at least my, fibro' came to pass. We probably all ache because we are so tensed up for combat all the time! And no wonder our immune systems are shot. The poor things are constantly geared up for warfare.
And very interesting that you should say that about your mother craving bread while pregnant. When I was a kid I hated bananas and eggs, which, bizarrely, are both cited for people who have suffered sexual abuse (perhaps a bit too Freudian that, but it does make you wonder!). I also, very interestingly, didn't really like chocolate (I just ate it to bond with my father - a whole other conversation), and can remember a couple of nasty incidents of car sickness and throwing it up (an example of my mother's 'neglect' - she wouldn't let me sit in the front seat although I got very bad car sickness. I spent hours-long journeys feeling dreadfully ill and often, on day trips, spent about the first hour after we arrived feeling poorly until it wore off, then I had to endure it all the way back again. I'd like to say the 'thinking' was that it was all in my head, but one look at my poor cheesy face told them it wasn't. It just didn't suit my mother to inconvenience herself for something so 'weak'.) But, getting back to the point, I often wonder if those banana/egg food dislikes are something my mother disliked when she was pregnant with me. My brother, who was allegedly a 'rape' baby, didn't like tomatoes or anything pickled, both my father's favourite foods, and that one's always struck me as very weird too. Surely not coincidental - did he pick up my mother's revulsion to my father in the womb?
With RLS, as far as I know, I have no family history of it, but my family were both secretive and odd with medical problems - some were annoyingly bandied about (my mother's favourite was to say I had 'glandular' problems), and others were completely ignored. I do have migraines in the family though, even if they were played down so much my mother actually forgot she had problems with them during menopause - assuming she wasn't lying about them, of course, which I don't think she was because I remember seeing her with one once and she was the colour of cheese curds. I also, I believe, had a cousin on the other side of my family who had TN/migraines who killed herself becasue the pain was so severe. I'm getting acute migraine-level pain in my temples at the moment when I stand up, it's definitely attached to the vertigo, but who knows why? I don't. I give up on a lot of these bizarre symptoms and just try to go with the flow on them - they come, they go, just ignore them when you can. (Maybe that's shades of my mother right there!)
My RLS is quite pronounced and I know a few of the triggers, but I can still get random nights of it, with no visible triggers. Mine freak me out, because they go on for hours at a stretch, usually worsening and worsening till I have to get up and take an iron tablet. Sometimes that helps, and sometimes it doesn't. Avoiding triggers is the best medicine, but not foolproof. And I loved the doc telling you you'd have no problems with Gabapentin withdrawal. The HELL, if you'll pardon my French. When I came off anti-convulsants, I had terrible withdrawal. I got some of the symptoms I had when I first started taking them (hallucinations, hyper-alertness, altered states) but the worst thing was the shakes, feeling like a drunk with DTs, and hyperactivity. I felt super-anxious and like I'd had a pint of coffee every hour on the hour, and it went on for at least six weeks, every SINGLE time I dropped a tablet. Still, I was so glad to be shot of them I was happy to be suffering!
Lastly, thanks for the links - going to check them all out and have a proper look at Micki Rose's book. It sounds interesting, and you never know when you'll find something beneficial or have an ah-ha moment. I've found them in the strangest of places, including talking to other sufferers like yourself. They often offer the best insights of all, and of course that all-too-necessary reassurance that us emotionally neglected kids all need to have! X
Hi. I know what you mean about adrenal fatigue. Most of the people I read refer to it as low adrenal reserve or just adrenal imbalance, and what they say, or propose to do about it changes over time. I first heard of adrenal problems in connection with thyroid disorders - everyone saying that you needed to treat adrenals first on the forums, and I had a copy of Dr Peatfield's book (which Dad bought when Mum started to become ill). I did the cortisol saliva test that was recommended (bear in mind I had already tried numerous GPs and an endo who gave me no clue) and it was poor. I ended up getting an appointment with him and after tests, diagnosis etc started an adrenal glandular (you can buy supplements of most glands, dessicated) in very low dose and built up as advised. I have a thyroid glandular too. Have used 2 different ones of each in varying amounts, never got on well with the thyroid one. I carried on looking into what was underlying the problem though. Understandably now newer thinking seems to say that we should be addressing
Deficiencies in Iron, Vitamin D, B12, Folate
Blood sugar imbalances (hypoglycemia and insulin resistance)
Imbalances in androgens, progesterone, estrogens
Neuroinflammation
Autoimmunity
Thyroid hormone dysfunction
Viral infections
Parasite infections
Mitochondrial malfunction (aka mitochondropathy)
Neurological malfunction in the circuits that control blood flow (dysautonomia),
as all of those can cause adrenal type symptoms and fatigue.
As I said, I haven't bought Micki's fact sheet but probably should. She said when I first talked with her that she was seeing quite a lot of Dr P's patients, as he just didn't get to the bottom of what was going on, and I'd have to agree. He was great, such a kind man, which I really needed at the time, and he helped show me some directions to go in, but didn't know enough to explain all of what was happening. That said, I still think thyroid dysfunction is playing a significant role in our pain etc because of how it apparently interracts with neurotransmitter and mast cell function. Had I been bad enough to need or been able to tolerate NDT, maybe my picture now would be different.
Even pre-Covid, support for depression was appalling and the people who will be suffering now with that and abuse makes you want to weep , or scream.
I have to agree that your brother's dislikes could well be for that reason, as well as your own. The complexities of how we react to trauma at any stage of our development are a bit advanced for me. Micki and others talk of ACE - Adverse Childhood Events, and trauma, being hugely significant, and she too talks of emotional and physical neglect. I think it does play a small part for me, but nothing like the level of your own situation. Here is her introductory bit, if you fancy a read, and a picture of the book.
Being constantly stuck in fight or flight or freeze, over many, many years, obviously isn't very good for us!
Yes, I can see you understand exactly how I felt - that withdrawal wasn't pleasant, but I was so glad to have made the decision and actually be getting off everything. I had no idea where I was, who I was, couldn't find my way around my old family home (of 45 years), anxious, shaky, flu-like....And when I protested to another GP that 1st one had said I'd have no problems, he said she was right and I shouldn't have (or didn't have?) and for the next 6 months told me that every one of my reported symptoms was due to me coming off all my medication contrary to advice, as did the dermatologist that he referred me to.
Anyway, we are not now alone with our problems and I'm very much appreciating the insights and the reassurance - which you are so spot on with again. I crave gentle handling and understanding and boy is it hard to find. I am getting better at not actually falling apart without it, but maybe it is just that I know now it isn't coming.
Thanks for that link - really interesting. I always find articles on childhood trauma & illness a bit depressing though, because, like trashed gut microbiomes, how do you fix a lifetime of psychological problems related to your childhood (which you often have problems even remembering, or being sure your memories are accurate)? One of the difficulties is these things are so ingrained in you they are now your behaviour, not just things that happened to you. It has taken me my entire life, and I'm still far removed from understanding everything, to work out why I do things, or react to things the way I do. Only in the last few days, for example, have I established my sleep problems are partially connected to a kind of agoraphobia due to inadequate socialization as a child (which has left me struggling sometimes with being outside alone). And of course, on top of that, just knowing the connection between your behaviour and the way you were brought up doesn't FIX that problem. You still have to struggle to find a solution to changing the behaviour, which is very old, and deeply-ingrained, and often the only way you know how to deal with things. It's a long, slow, frustrating haul, for sure.
Okay, we're both 'all writ out' now, so I'll leave you in peace. Thanks for checking in. I appreciate it. Best of luck with your ongoing health. You know I'll be rooting for you. X
P.S. Maybe not relevant but I thought I'd mention it in case it reassures you. With you needing 'gentle handling', I have had this a couple of times in my life from health care professionals and it is a phenomenal feeling. My most memorable was from a dental nurse. I have quite severe dental phobia and I had to see a dentist I didn't know in an emergency (I was in my forties). The dentist was very nice and very understanding but her nurse just took my hand and held it while I was in the chair. No-one had ever done that before, or has since, and it was AMAZING how much it comforted me. It was such a simple thing to do, and she dropped my dental terror by an immeasurable amount of points, plus I remember it as one of the most spectacular moments of kindness in my life. Interestingly, you could argue it was because she treated me like a frightened child, which I effectively was. I think what I'm TRYING to say is you should never be ashamed of needing gentle handling, and if you're capable of asking for it, or admitting you need it, you might sometimes get it. I was lucky that day that she just gave it, without being asked, probably because she was a good empath, but as someone who isn't good at asking, I'm nevertheless going to encourage you to try it and take good care of yourself. X
You are right, it is a long, frustrating haul. We are who we are because of what we have lived. Maybe we don't need to try to change the behaviour, but the way we feel as we do it. I hope that the book will help you, too.
Thank you for that comfort. I'm so glad that at least once when you really needed it, someone genuinely kind was there for you. A small action by one person can make such a vast difference to another. I shall remember that, and shall try to ask more from those people who aren't 'gentle' but so easily could be. And I shall try to remember that showing your empathy is not a weakness, but human.
I will be rooting for you, as well, and wishing you find both peace and kindness xx
I think what you say about depression, addiction and ill health is spot on. It is too easy for doctors to prescribe antidepressants without understanding causes and circumstances (and of course they have no time) and so perpetuate a problem that needed different handling. A sledgehammer to crack a nut. Your world gets smaller and smaller and no - not a straight line out, even if you can see a line to focus on. Sorry about the vertigo. I know you said before about B12 but might you not be getting enough as I believe it can cause it, too. Before I started the (methyl) B12 and folate, I felt like the ground was coming up to meet me in waves and kept bouncing off walls and door frames as well as putting things away in all the wrong places and not making any sense. Theoretically my blood levels are acceptable but again I suspect that the genetics predispose me to not be able to get either into the cells well and that my need is greater than some. It has certainly made a difference, even if I don't understand enough of why.
Childhood - hmm- often happy and no major drama, yet I was often unsettled and didn't feel like I fitted in anywhere, for lots of little reasons. Some bullying at both schools. Just 'not quite right' and often a bit ill so off school which clearly disappointed/annoyed my dad. I try to remember that, like all parents, they were young and finding their way and didn't always get it spot on. I think I was just more difficult for them than my sister, who seemed more like them. Some of the trauma writers suggest that parental or even grand-parental trauma can pass down, and it would be fair to say that Mum had some bigger issues, as did her mum, and none of that was ever addressed. Dad too, to a lesser extent. It was all still going on as older sister and I were born, so who knows. Mum craved bread when she was expecting me and I suspect that my gluten issue stems from that. I think my genetic weaknesses triggering early (like the 'Fibro'/COMT/MTHFR) results mainly from the 'stress' of the undiagnosed food intolerances. And my 'trauma' and other health issues cascade at least partly from the effects of that - dairy intolerance = ear infections = unable to hear = became far too good at lip reading and always watching facial expression = hyper-aware/sensitive. (Plus tons of antibiotics, inflammation, time off school, bullied etc). More personal trauma for me as an adult really, but again, lots of little 'insults' rather than any one event.
You are so right about it being ingrained, self-criticism, all our fault, somehow our responsibility. It is not, how could it be. Especially as children, we react to the people and circumstances around us in the only way that we can. Unfortunately, what we experience is disproportionate as it is such a big part of an as yet small life. Even talking to my sister, some things that I remember she sees quite differently or can't remember at all, as they didn't play quite so big a part in her 2 year older life than they seem to have done in mine. There are so many factors that could be involved. One of the reasons why I like that book by Micki Rose (Chronic Illness) is that she had significant trauma as a child and got into this field as she tried to make sense of and resolve her own illnesses.
Interesting that you mention RLS. I suspect that too may be connected to neurotransmitter imbalances/COMT/MAO as both low and high dopamine seem to be implicated (although so are many other things). We are prone to it as a family and those relatives with it all had/have Pernicious Anaemia or B12 deficiency, and/or thyroid disorders, usually hypo (some AI some not). I used to keep waking Dad as a kid, kicking the wall at night, which makes me wonder if it was happening even then, but no-one ever said anything about RLS. It was a few years before my grandmother told me how bad hers was and I heard about everyone else. It didn't happen all the time for me. Oddly when I was prescribed gabapentin and amitriptyline years later (at which point I was getting RLS) it seemed to have more or less stopped by the time I came off them. I was still twitching and jumping a lot, but the magnesium seems to have resolved that. Magnesium supports your COMT function and also can help in mild-moderate RLS. Magnesium and gabapentin work in similar ways (you aren't supposed to take magnesium as it interferes with how gabapentin works) and some doctors use magnesium to help with gabapentin withdrawal. I wish I'd known that when I was coming off it - I did ask GP the best way to come off my 15 years of assorted medication and she said I'd have no difficulties with withdrawal from any of them. Utter rubbish.
Interesting that you wake so quickly after dropping asleep. I wonder if your being hyper-alert/tense/stressed with high adrenaline could mean that you hyper-react to the jolting awake thing with an extreme stress response. I expect that my twitching/jumping was probably that normal action, just stronger than some (it seems that it can be very mild and we sleep through it or strong and wake us completely). But your reaction sounds much more like adrenaline (which can also be linked to RLS) - which could be a blood sugar imbalance as well as a stress response (or possibly both.) Just in case there is anything useful, here is Micki's insomnia page with bits about blood sugar and adrenals. (I haven't bought the adrenal factsheet yet but should do). purehealthclinic.co.uk/2020...
Micki keeps talking about the benefits of bananas, which takes me to my 'ice-cream' of choice! Early in lockdown, Asda sent me two bunches of overripe bananas (for me, anyway - histamine issues), so having heard that you could freeze them, I did. Peeled and cut in half, and half again, then flat in a bag. Oh boy are they good - like the best kind of banana ice cream. I can just get a quarter out and nibble straight from the freezer. Really helped when it was so hot and quite made up for not being able to eat it anymore!
Bad sh*t does happen to good people but then we can get our heads together and help each other out of the mire x
there are lots of natural things one can take and do to help the symptoms, and ways to change to address the cause, whole foods plant based diet, cut out sugar, wheat and dairy, as they are the most common intolerances that can cause inflammation, breathing oxygen under pressure helps with the brain fog immensely, supplements like magnesium malate helps muscles relax and be less painful, coenzyme Q10 for energy, vitamin D3 is a definite must, B complex, helps relaxation, stretching every day, and exercise (gentle), magnesium glycinate in the evening can help sleep, probiotics and L- glutamine, liquorice root and marshmallow root help with the irritable bowel. also it is necessary to heal the membrane in the gut which can be the cause of the whole syndrome in the first place. there is more, like detoxing the body of parasites and heavy metals and yeast overgrowth, all of which would help. but I think that’s probably enough for you to research for now if you are interested in this avenue of healing yourself,
these are all things I have done and have worked for me. hope this is of some use.
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) and I fall off the wagon and pay for it the following day.
Anybody tried a vibration plate before?
Lyme disease misdiagnosed 
Saying no to invitations, pacing yourself
40+ years of Exhausting Fibro!!
Pain after activity/exercise...
