Feeling hopeless
Posted , 8 users are following.
Hi.
I've been having a really bad flare up the last 2 weeks and have just been feeling so down . I feel like I'm getting worse. I just think is this it now for the rest of my life ? I'm only 30 and I don't know how I can cope with it forever.
I'm also worrying about my future health. Like what if I get a pain and I just put it down to fibro when it could be something more serious. How am I meant to distinguish between different pains that are fibro or something else ?
Just feel like I'm in a bit of a spiralling black hole at the minute and don't know how to pull myself out.
xx
0 likes, 8 replies
Magpie2me Molly4028
Posted
nikki03251 Magpie2me
Posted
Hi Maggie totally agree with having to destress, iv had fibromyelgia for about 5 years and was able to manage it until my son started with his problems year and half ago then excellarated 6 months ago when one of my brothers died then my mum 8 wks later and can barely walk some days more often than not and constantly cancelling appointments it's absolutely dreadful x
Magpie2me nikki03251
Posted
nikki03251 Magpie2me
Posted
I just wrote out a long reply and took me ages and deleted it by mistake lol sort and sweet it's definitely stress and iv been changing all that as much as I can which is strange for me coz I'm the one everyone comes to with there problems but just can't do that anymore. I also got a baby kitten last week and I'm njoying the cuddles and watching her play she is adorable an I do she's helping me destress xx
Mom44 Molly4028
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nikki03251 Mom44
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gerry09721 Molly4028
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Hi Molly- I've lived with this problem for 45 years but you won't have to . Despite everything you have read or heard there is a medical test that wil give an exact reading of your FM . This a true medical test based on blood markers . I've taken the test and scored n 82 out of 100 . The test is offered by EpicGenetics and is fully covered by US insurers. The real good news is a drug known as BCG has been shown in an early trial to fix the problem . BCG has been used for 80 years as a vaccine to prevent TB . For the last 7 or 8 years it has been used to assist in the fight against cancer and a clinical trial request is awaiting FDA approval to ffight diabetes 2 .A similar clinical trial request for FM using BCG is awaiting the ok from the FDA . Both trials have been developed by the Faustman Lab at MGH in Boston . Each condition uses different vaccine strains , dosages and frqencys so each trial has to be approved on it's own merits . Two vaccine shots is thought to be the case with FM . The vaccine will be very low cost . Google EpicGenetics and Faustman Lab. /BCG and regain some hope .
lesley59234 Molly4028
Posted
Hi, I'm so sorry you are feeling so low. I too have been through these feelings of 'if I'm like this now what will I be like when I'm old?!' And the wondering about pains that could in fact be something else more serious but the Doctor puts everything down to the fibro. I've had the condition for some considerable time. After I got a really bad virus infection in my twenties, it took me 5 years to feel even vaguely back to some sort of normal functioning.
I have two things to recommend but neither may suit you or be an option but I'm putting these ideas out there for anyone who may be able to try and benefit.
First, I live in the UK and while its not possible to keep going to your GP and demanding tests I did find a private company called Bluecrest who offer very reasonably priced health checks. I specifically wanted to have a check for ovarian cancer as I was getting back pain so bad it felt like period cramps even when I wasn't having a period. They ran full blood tests on all sorts of metabolic functions and the ovarian cancer was one you could specifically ask for. So, as I don't smoke, drink or go on expensive holidays I decided that I could spend a couple of hundred pounds getting these checks done privately every now and again. This helps allay my fears of something else going on in the background. It's worth it for the peace of mind.
The second thing is 'experimental'. I started taking concentrated Turmeric powder capsules along with a Magnesium supplement. Turmeric has long been known as an anti inflammatory and many cultures have used it medicinally for years. The Magnesium was suggested by an assistant at Holland & Barratt (UK Health supplement shop) as it aids energy release and it is known that many people are deficient in it. Alongside this I started on CBD oil which is rapidly gaining ground as a treatment for chronic pain and may even become available on the NHS if the petitions are effective. I have been taking these for about 6 weeks now. I haven't stopped taking my prescribed medication, but that was barely touching my symptoms. AND......... I feel FANTASTIC!!!!!!!!!. I can hardly believe it myself after being in pain for over 20 years. My fatigue has almost vanished, I now just get more normally 'tired' like everyone else.
In a few weeks I will approach my GP to see about cutting down on all the prescribed medication. I don't want to come off that and find that actually this good spell is just a coincidence. But as my liver function results from the Bluecrest health check were pretty poor I think it is work at least trying to cut down on the 20 or so tablets I take every day.
As I've said, this may not work for everyone but I would certainly encourage you to try the Turmeric and CBD oil. The turmeric is reasonably priced but the CBD oil is a bit pricey so I know it will not be possible for everyone to keep up this regime. I will continue and see how I get on. I'd rather never go on holiday or buy new clothes ever again if it means I can afford these and stay pain free.
Good luck.