Chronic fatigue syndrome

debbiedo49

@markyboy never heard of it, hypersensitivity syndrome? You learn something new every day. 

debbiedo49

@sarah50 so what are you suggesting? Do I not say I have fibromyalgia? My doctor says I have fibromyalgia. Are you saying it's wrong to say that? Are you saying we should all be calling it chronic fatigue syndrome? To me chronic fatigue is a symptom. My doctor says chronic fatigue is a symptom. Why is there so much confusion? Anyone know? It's like going around in circles with no right answer isn't It?

debbiedo49

Hypersensitivity and Chronic Regional Pain Syndromes: Sympathetic Reflex Dystrophy 

http://www.acupunctureintegrated.com/articles/hypersensitivity

@markyboy is this what you mean?

markyboy

When i went to see a specialist to get my chronic fatigue diagnosed this is what he said in his report that i was suffering from Chronic fatigue and other Hypersensitivity syndromes including Fibromyalgia and irritable bowel and stated that in majority of patients if you suffer from one of these conditions you are likely to suffer from others

debbiedo49

Thanks

[Deleted User]

I hear you debbiedo49 ......Fibromyalgia is a relentless nightmare ...i hear your frustration as we experience so much misunderstanding which adds to our struggles...sometimes i feel nobody "gets it" and i have experienced profound comments that hurt me to the core of my being....some comments 1) GP said you dont look ill so why you asking for a sick note! daughter said there is nothing wrong with you stop saying there is...its a made up illness and doesnt exist...you need to lose weight and get yourself out of your rut! ( we havnt spoke for 3 years) ive been told by others to have a early night lol..to exercise when i struggle to look after myself due to severe fatigue. i could go on ...its very isolating

markyboy

Chronic fatigue and Fibromyalgia are now recognised conditions i have recently took out travel insurance and these conditions are on the medical declare conditions list and in most cases increase your premium

sarah50

@debbido49 what I'm saying is that the word Fibromyalgia is meaningless the condition is far more devastating and calling it muscle pain is insulting the argument can be equally applied to CFS and ME. Perhaps part of the reason sufferers are often not taken seriously when we try to convince so called medical experts just how much this condition affects every part of our daily lives is because they take one quick look in our notes at our history and it says Fibromyalgia (muscle pain) to a GP with no experience or a nurse at a face to face consultation for PIP it probably suggests to them that it's not really as disabling as it is and doesn't fit their descriptors. This means we have to battle for the help we need.

sarah50

@markboy travel insurance is another thing you have to declare everything to insurance companies even corns and bunions as they can use any undeclared health issue as a reason to refuse a claim even if your claim was totally unrelated to something which you previously went to the doctors for. Afriend of mine took out what she thought was a really comprehensive policy and diligently included what she thought was all her complaints. Her claim was refused because she had been to doctors years before suffering lots of headaches she had forgotten about it as the headaches were caused by an eyesight problem and had been solved with different glasses

sarah50

@vickyanne hi ? Really sorry to hear your story just so you understand. This is not a debate about whether it is real or not. It is definitely real and it's a hell all of its own. The debate here is why it is even now not seen as a big problem. I believe it is not taken seriously because the medical name used for the condition does not reflect the devastation it causes. I hope your having a low pain day. X

[Deleted User]

 Hi Sarah its okay i know its not a debate as to whether or not it exists i was empathising with a fellow fibro sufferer. Thankyou for your best wishes of low pain ..i am coping with the pain today as this is my 6th day of high dose diazepam as given to me at A&E Saturday as my neck and back are in spasms. Also Naproxen as well as codiene and paracetamol ..off to bed now as i cant keep my eyes open. 

debbiedo49

I have breakthrough pain daily despite the meds. I find it very hard to get my g p to understand that there is more pain and it's disabling. They know so little about it and the meds are trial and error. I did get my hopes up when I got to go to pain clinic at the practise, but the person is a pharmacist and suggested decreasing my pain meds over one month due to side effects to see if it made any difference. At the time I agreed. When I got to 3 weeks I gave up as I wasn't coping especially not sleeping. By then I was thinking what am I doing listening to a pharmacist? Is this a cost cutting exercise? Anyway I couldn't make my appointment and so far haven't rescheduled. I feel let down that I haven't had specialist support as my g p says fibromyalgia can now be diagnosed and treated at g p practise. Apparently I don't need to go to a specialist. I think this is a cost cutting exercise. What do other people do about getting the right treatments and what do folks do about breakthrough pain? I'm only on gabapentin for fibro.

sarah50

Hi @debbiedo49 so sorry you are finding pain control so difficult. I'm not sure what pain meds you are on but I'm guessing they are opioid based. The problem with this type of painkiller is that they only really help short term. Taking opiates longterm can cause side effects like hyperalgisia and osteoporosis both of which add significantly to the pain we feel, this might be why the pain clinic recommended a reduction in dose, as for not seeing a specialist im not sure what speciality could help, I've never found a GP to refer me to one and it does feel like we are getting care on the cheap

[Deleted User]

well ive had my sleep and just woke up my "nap was from 12.30 to 8.30 ovbiously something very wrong here ...I guess i should be glad that at least i have been knocked out from the pain for a while as the diazepam has me like a zombie!! the spasms are back ive only had breakfast and now i need to take all my meds again! I am also very worried that i am being turned into a pharmaceutical junkie.....surely there has got to be a better answer 

sarah50

@vickyanne so sorry you're having such a tough time. Diazepam are brilliant for spasms but they are really strong so I'm not surprised they make you feel like a zombie, I'm glad you managed a few hours sleep at least that helps us feel that we can cope a bit better. I like you really worry about becoming a junkie on top of everything else and at the moment I'm drug free as I can't tolerate the Amitryptaline and gabapentin that the doctor offers and he won't prescribe opiates or sleeping tablets etc but I'm really struggling to cope with the pain. I use heat pads hot water bottles. Epsom salt baths. Meditation, mindfulness etc. A friend of mine swears by cbd oil but it is expensive as she buys a quality organic one from Holland and Barret, its about 80pounds a bottle which lasts about a month. I think its a question of getting on the internet and doing some research then trial and error for what helps you as we are all so different. I hope things improve for you soon. Xx

[Deleted User]

Sarah thankyou for your kind words and understanding. i have used cbd oil and it helped at the time but then didnt seem to have the same effect ...i am hoping to be prescribed the medicinal cannabis in Novembber as i have done my research and feel it has a lot of promise as i also have Complex ptsd. 

sarah50

@vickyanne not promoting or advising but I have turned to the real thing in the past and it really helps both pain and quality of sleep x

[Deleted User]

To be honest Sarah this what i will do if not prescribed it as my Gp has told me that zopiclone and diazepam lead to dementia which i can totally see as alcohol can so why not. However the only support that we get is these types of meds...its due to the fact that the big pharma are running the nhs......xx

sarah50

@vickyanne I agree so many people believe that big pharma are the only ones with answers. It even proved it in my decision letter for PIP. In the justification for zero points on every descriptor it said not taking meds so its reasonable to assume you can manage unaided. Then compounded by the statement that The GP keeps offering me sleeping and pain meds and I keep refusing. I went to the GP to check if they had told DWP this. The GP printed the form they sent them to prove to me they didn't say it. I have never been offered sleeping pills or opiate painkillers. I have tried amitryptaline and gabapentin and several different antidepressants but I don't tolerate them. This is why I'm drug free and it made me so angry that the healthcare pro at the face to face did not write down any of the pain control methods that I use as an alternative. The system is so biased it's cruel!

[Deleted User]

soooo agree with you and even though i take zopiclone and diazepam and codeine with paracetamol i too was told i dont take enough painkillers even though like you say gabapentin on full dose did not stop my pain and the side effects had me like a zombie and the amatriptaline put me in A&E With night terrors and anxiety levels so high my gp couldnt get a reliable BP reading as it was so erratic! the psychiatrist was not happy that i was put on that antideppresant with Complex ptsd!  trouble is the doctors are struggling too as DWP and the big pharma have been pulling their strings too. If the specialists have not worked out what my two conditions are  how can pen pushing DWP insist on treatment protocol anyway......? Gabapentin by the way damages vital neurons in the brain and are used off label for pain disorders as they are for seizures!!! I also have liver disease which makes me very wary of meds. if it wasnt for the money made by Big Pharma i would swear they want rid of us!