Folksy Ltd

Fellow fibro's

(Hanna-Mae Williams) #21

I’ve never heard of the psoas muscle! I’ve considered the injections though, but apparently it’s so painful!

(Sue Beacham) #22

I have Hashimotos Disease, Chronic Fatigue( M. E ) Asthma and my latest nerve damage to my gut, these are all hidden illnesses, I look OK , People don’t understand how difficult it is each day, I have unwell days and worst days, My doctor says I have to learn to live with my health issues because I will never feel well again. I have deteriorated more so the last 8 yrs after I drank radioactive iodine to kill my thyroid, soon after this I had a Thyroid Storm, it was awful, I had stroke like symptoms, it took me about 6 to 8 months to get over this…this why I craft, when I can…

I sympathise with your Fobro my husband suffers it and is in chronic pain and sometimes he has like flue like symptoms.

When you are unwell rest, watch a good film, sleep when you need it, and then when you craft and feel you have a little more energy, enjoy what you do.

How old are you sweetheart, Im 64 and I was diagnose with M.E age 34yrs, then Hashimotose disease age 40yrs

When your not well and you can, sit on a lounger in your garden, play your favourite music

I have a friend who has Fibro, she is in her mid thirties, she has started a new treatment and she is pained free and has her energy, it stop cravings, boost energy and burns fat, my friend said she tried everything and nothing work…apparently this does, I have heard other who have said very good things about this drink

Hope it helps, my self and hubby are going to try it

All the best Sue x

(LittleTrinketGirl) #23

That’s for weight loss isn’t it? :confused:

(Hanna-Mae Williams) #24

What a helpful reply, I often feel guilt over resting, but sometimes I just feel like I’ve been run over by a bus and am forced to just lie down until the pain subsides. Do you know what medication your friend tried? The one I’m on at the moment makes me so tired! It’s great for the pain and sleeplessness, but I find it so hard to get going in the morning! I’m only 27, and trying to remind myself not to compare myself to other ‘normal’ people my age. I can’t imagine being able to do all the things people my age do. On a good day I just about manage to go for a coffee with my mother and take the dog for a short walk!

(Plumporridge) #25

I didn’t find the facet joint injections painful, they were done under a sedative, but actually I went right out and had a wonderful sleep! But the results did not last, so I think my pain is all in the muscles, not joints.

(Sue Beacham) #26

Sorry I’ve only just seen this, yes it is good for weight loss but it is also good for booster energy, also my friend said her pain has gone.I have not used it my self so I can’t say.

Have a good day

Sue x

(Sue Beacham) #27

I’m pleased what I wrote was helpful to you, our biggest problem when we suffer health issue is feeling guilty when we rest, the problem is, quite often we look well and even friends and family don’t understand, I’ve had said to me, “its all in my head !!,” " your just unfit join a keep fit club, these remarks are so lowering to hear and cause us to feel depressed, unworthy, low self esteem, useless…most of long term chronic health are hidden illness, are hidden on lookers can’t see them…if we had our leg in plaster, we would have more empathy.

The medication my friend is on

It has helped my friend who has fibro, she had tried everything, this is the only product That has helped her, I hope this helps you

Sue x

(Jayne) #28

I totally agree about those comments leading us to feel depressed, I think one of the worst ones I had was from my old boss (a pharmacist), he told me that all I needed to do was sort my mental health problems out and I would be cured!!! I only started suffering feelings of worthlessness and depression because of being in permanent pain and getting so little understanding and help!

Oh well, guess I’ll just do the usual and smile and say ‘I’m fine’

Jayne xx

(Sasha Garrett) #29

My own neurological quirks are in a way the opposite to those that most of you describe - I had a tumour removed from my spinal cord and that has left me with reduced proprioception and/ or thermoception to random bits of my body (I remember the chronic pain from before I got my diagnosis and how draining and depressing it was). But that is not why I finally decided to post, I used to work as a drug development chemist starting off on CNS drugs (including a sedative) then ion channel modulators (including 3 different mechanism of action pain killer projects, effective pain killers for chronic conditions are something of a holy grail for pharma companies) so I thought I would look into what research there is on fibro and on any of the suppliments mentioned (given that a number of you mentioned sleep issues the idea of you drinking something packed with caffiene and stimulants didn’t sit well with me).
So the coffee drink - the only ingredient that they list online with amounts is caffiene and it contains about the same as a standard cup of coffee. Other ingredients that they mention (but not with quantities) that are known to have an effect on the CNS are:
L-theanine - a tea leaf extract and a derivatised glutamic acid - evidence of being an anti anxiolytic and improving the quality of sleep (but not the duration) and mental sharpness. You can buy tea leaf suppliments or could try drinking green tea.
Phenethylamine - part of the synthetic pathway for catecholamines which produces things like dopamine. That pathway starts with the amino acid phenylalanine and you can boost levels of that through dietary sources like eggs, milk and soyabeans. (The body tends to metabolise phenethylamine in the gut so taking suppliments of that would have little effect)
aGP choline - choline is known to be important in nerve function and is used to synthesise acetylcholine - one of the key neurotransmitters. You can boost choline levels easily through diet rather than suppliments - good sources include eggs (again), salmon, beef.
I think someone else mentioned tumeric - that contains a powerful anti inflammatory agent, the body isn’t very good at adsorbing it though this can be improved by co administration with black pepper and fat. Cinammon has been linked to improving sleep patterns and I think we’ve got the start of the flavourings for a curry going on there. I’m not sure what advise you have been given on diet but it might be worth giving it a shot and adding more eggs, green tea and curries into what you eat to see if it has any effect. (you might have guessed I got disillusioned with pharma and I’m all for trying natural stuff first)
I don’t know how many of you turn to your electronic tablets during bouts of not being able to sleep, these give off lots of blue light which the body associates with the morning so they might be having a detrimental effect on your sleep. Modern tablets have a night mode which cuts down on the amount of blue light making the screen much more yellow, remembering to switch it to night mode made a difference to my OH’s sleep quality after he took to watching his in bed.

(HAZARDious) #30

My electric blanket changed my life, literally, i have alot of pain in my hips and was unable to walk at all for 12 months, but since using the electric blanket, i have less inflammation in my hips and im able to walk quite some distance. I also have sluggish bowel, i stopped eating meat and i have alot more energy now, i presume because my bowel was struggling to digest the meat and probably using alot of energy up trying to do so! I now dont take any meds at all, but instead eat alot of anti inflammatory food, the book “foods that heal” is a great resource.xx

(Plumporridge) #31

That’s interesting about the electric blanket @HAZARDious, do you think it is the warmth soothing your hips? That must help with your quality of sleep too.

I came to see if anyone heard the discussion on Jeremy Vine today about Lyme Disease. I’ve just been looking it up, not for the first time because the symptoms sound so like fibro, and one article says “many Lyme patients are often misdiagnosed with different conditions such as fatigue, fibromyalgia, rheumatoid arthritis, ME, or even depression”. Just wondered if anyone had ever thought about it as a reason for mystery aches and pains, or even been tested for it?

(Nikola Matulewicz Evans) #32

Not been offered pain clinic … have had Physio which helped short term. I was on Amatriptyline which in some ways aggravates my health issues. Now on Nortriptiline which suits better. Trying to get fitter and lose weight which makes me feel more positive. X

(Silvana Briers) #33

Ahhh, amatriptyline, a bad one if ever - seems to be prescribed for everything. You’re supposed to get this in a small dose of say 5mg (can’t remember too well, mg or g? as a few years ago) and work up the dose. I was given 50 straight off and I was virtually unconscious for 3 days! That was a nightmare piece of my life!

(Nikola Matulewicz Evans) #34

I was on 50mg plus other meds for a year ! I’m just coming round after that year! Was like walking through treacle!

(nellyarts) #35

Hello my fibro friend x I feel for you .It has helped me being on Folksy as just to get a like on an item makes my day . Take care nellyarts xx

(nellyarts) #36

Hello sue thank you so much for being the first person to like my shop you encouraged me to carry on .I am sorry to hear that you have hidden illnesses too, its so difficult for people to understand if you look ok,well I think you look Fab x.I started with fibromyalgia when 40 followed by a heart attack in my fifth year.Thought 60 would be better but got trapped nerves in my neck, constant pain and now tummy problems too.Just as well I love I’m my own as my living room looks like a crazy art studio and I am to fatigued to tidy up.Take care of you xxx Sandra nellyarts

( Carol ) #37

I don’t have fibro (my cousin does) but I do have hypopituitarism and one of the hundreds of symptoms is feeling tired/exhausted. I work part time as a passenger assistant on the school taxi with special needs children and quite often I’m having to sleep between the morning and afternoon school runs which means housework in the evenings (hubs helps a lot) leaving little time for crafting other than weekends.

(HandMaidSW) #38

Hi to all fellow chronic pain & fatigue suffers! Am reading your comments on a particularly rough day (& after several none stop months). I hear myself in many of your experiences, & can really relate to the frustration of not being able to craft when you have such creativity within! Loved looking at your shops & items on sale, & just wanted to post support to everyone in the group. Hurrah for the ‘good’ days!!!:grinning: