I've been diagnosed with Fibromyalgia
Posted , 6 users are following.
My I've suffered with global body pain for years now. After reading "Invisible illness" referring to crohns disease, I thought I'd comment here to try request for Patient Access to highlight how serious Fibro myalgia is too.
It's taken control of my life and I fight daily to get back into control. I was diagnosed with the following symptoms :
Disorientation
Slurred words
Confusion
Losing tail of thought
Lack of focus
Intense, unbearable pain in back of the head, neck, shoulders, shoulder blades, back, legs, tendons, wrist and fingers.
I have no swelling or anything to give evidence of this pain and it is always there.
Walking does help but walking is like a temporary painkiller and it gets worse before it eases, like drastically worse. After a walk, my body feels like somebody is breaking my bones. This lasts from 2-4 days and I might get a days rest. Before the daily pain returns.
This has had an impact on my marriage as my husband can't see my pain and only HEARS my pain.
Sometimes I think that he and others think I'm lazy, because washing dishes is difficult, cooking is difficult moping, hoovering and even having a cup of tea! Making the tea and holding the cup.
I'm sick and tired of being judged.
I've been told I should exercise more, stop thinking about the pain too much, keep myself busy..
All the above USE TO BE ME.
I worked, loved cooking, loved football, dancing.
I'm the one missing out on things I used to do and mentally I want to do those things again but my physical health is restricting me and that's what's causing me to have psychological issues. Massages help ALOT, but then people think I'm looking for luxuries. Having a Massage and feeling great for 7 days is not a luxury. It's like physio for people like me. It helps a lot!! Reduces pain, stress, helps circulation, which means I can exercise like go swimming and walk to the park, see friends.
Even with my condition, I'm still the full time wife, I cook from scratch daily. I shop, prep and prepare ketogenic meals to help myself. Before I cooked healthy but we had bread, pasta and rice as sides. But now I have replaced all that with more veg.
The point is.. I cook, I clean I shop, I do all house hold chores but nobody is here to see how I get through it.
There's lots of pain, tears, frustration, accidents.. But by the end of the day all everybody sees, is a hot meal and an almost clean house. Oh.. I do get help if I ask with a response of sighs in return.. But if I had two broken legs and two broken arms in a wheel chair with head injuries I wouldn't have to ask so much and feel like ' I ask for too much'.
Simple maths, calculating bills, handling money and knowing every month where the expenses are going is hard enough for the average healthy Person. For me? It's like brain fog, total shut down and then feeling useless.
I'm now trying to get free couples therapy with (Relate). Just so that my husband can support me because he don't understand. Through sickness and health? Lately, out relationship has been tested and the build up of losing my confidence, feeling lack of independence and not recieving the love and support I need to get through this has made me significantly worse. I don't have any family at all. No parents, no siblings and only a couple of friends who understand my position. The rest of my friend have the same 'just get on with it and stop complaining' attitude.
So as you can see, my husband is my world and I did not marry him so that he could be my carer. I married him to have love, travel the world and make loving memories.
My illness has made him distant and tired of me.
I feel so guilty. So guilty that I pretend I'm OK as much as I can tolerate to stick to "OK".
I can't imagine what others are going through and how many couples are breaking up, separated or divorced because of these invisible illnesses. Many illnesses are being addressed but I think it's time we hear more about Fibro myalgia.. Unless I'm being made a fool out of? Someone said to me recently that "fibro myalgia is a made up illness for people who complain too much. There's no tests, no treatment, therefore just a title to give 'complainers' a piece of mind.
I'd like to see more adverts.. About fibro myalgia and depression. Depression mostly occurs when a type of trauma or suffering occurs and you don't recieve the right help, love and support. people deteriorate that don't get better with this attitude.
Please HELP FAMILIES stick together. Teach them how to be empathic towards invisible illness like depression and fibro myalgia!
The last thing sufferers need is nobody in the world to turn to. As much as we have access to organisations like Samaritans. It's not enough!
3 likes, 10 replies
sarah29978 anita80306
Posted
Oh you poor love, bless you. I do know how you feel, it can all seem so overwhelming. I feel the same and am desperately trying to find some answers. It's still fairly early days for me and I am trying to convince myself that once I get my head in the right place it will be better, but I am on a very steep learning curve and am finding acceptance a big deal. I still do all the things you do and 'soldier on', but have had to have a bit of a reality check.... I need to rest, every afternoon, I need help with shopping and take some shortcuts with cooking, I am not so fussy with housework (that's a biggy for me). But also don't feel so guilty about it now. Distraction is good for me, I can't do my old hobbies any more (patchwork and quilting) and can only dream about all the walks I used to do, but I do read and find crochet very therapeutic, even with arthritic hands, elbows and neck, I have a book on mindful crochet which is good. That's it for now, have just rattled off some thoughts, but your story really touched me and wanted to offer my very best wishes. Will try and add something more useful when I can. Take care lovely....
anita80306 sarah29978
Posted
Thank you so much for taking the time to reply. I do need to take time out. I to am getting my head around it, so can't imagine what the hell this looks like to my husband lol.
But even with his try, I would like to see more awareness then posters and leaflets. Something practical for non sufferers to engage in an activity or workshop.
When one gets ill, they're left alone to deal with it. Dr's, nurses and pharmaceutical companies want to teach for pills and standard therapy for patients only. They forget that those who have loved ones need to know what's happening because friends and family can be more than half the treatment sometimes. Especially couples, it should be mandatory for married couples to attend a workshop and 121 guide to on how to help support the partner who has become ill.
I'm thinking we should design a suitable workshop. Lol
sukes anita80306
Posted
Oh my goodness Anita, I am really sure that there are so many people on here who can totally go with what you are saying, I'm one of them, but I guess I am one of the lucky one's who's husband really does understand and is fully supportive of everything I go through. I also have spondylitis, Osteo and Rheumatoid arthritis plus unstable angina.
I am attaching something by Terri Been. I think it may get stopped by admin, as it has often does. If it does I will send it to you via PM. Big gentle hugs x
Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I
am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!
I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.
farzana10915 anita80306
Posted
Hello Anita,
I have just joined this group yesterday.
I just wanted to say, you are not alone. I was diagnosed in Jan of this year. I didn't have a supportive husband and we are now divorced.
It is not good to have people around you, that can't support you. It doesn't help, especially if you have depression.
I have lost a lot of family and so called friends, throughout the years. I am content now, I have to put myself first, I need to be the healthiest I can be for me and my 6 year old son. I also have chronic Fatigue Syndrome, Ibs and pancreas problems.
I hope and pray things work out for you and your husband.
anita80306 farzana10915
Posted
Thank you fazana10 for your reply. I'm sorry to hear about your losses but am happy that you've regained.
That's what I'm saying.. Some partners just don't care, they actually don't care. But some do but don't have resources or maybe a day class, or workshop to help the partner support their loved ones by knowing how and understanding their illness and suffering and burden of silence, a sacrifice tmade by the I'll partner, to not be a burden on the ones they love.
Leaflets, blogs are not enough. Some need verbal and practical education.
Like when men started using heavy pregnancy suits to know what is like to be pregnant for a women.
Thank you for your well wishes. I wish you all the best also x
theresa26201 anita80306
Posted
i too am experiencing all the same things. i get strange looks when i try to explain that the act of showering, shampooing, shaving is like I've run a marathon and I'm exhausted! folding laundry kills me..my fibro fog is absolutely out of control some days... etc etc ... atleast we know we're not alone. Healing vibes ~Theresa 💛
anita80306 theresa26201
Posted
Thank you for your reply Theresa. It means a lot. Oh I forgot to mention bathroom duties 😑 you're right. It is exactly like a marathon without a finish line or any cheers. Some days I cheer myself "yaaay you f*in done it"
😂
I wish you all the best x
sarah29978 anita80306
Posted
Aah the world of fibrogrot! Hope your morning is going a little better than mine! So far I have thrown beaten eggs all down my dressing gown, including up the sleeves and inside my fave slippers. Can't just wipe it off the floor as they are floorboards and it has gone down all the cracks. Smart thinking me gets to it with kitchen roll and a cocktail stick..clever..except I can't get back up again..grrrh. Ho hum anyway, manage a drama free shower and then go to put some jeans on. One leg in, muscles go into spasm, lose my balance and crash into chest of drawers....very rude words uttered. Anyhoo, get that sorted, still haven't had any breakfast. Go to get a yogurt from the fridge...and yes I dropped it!!!!
anita80306 sarah29978
Posted
You just described my life. Wow... I heard that I'm not the only one with fibro myalgia but I did start to think that the incidents happening with me are just too radiculous..
You post/comment means a lot and thank you for your honesty. I personally feel a little mind rest knowing that things like you mentioned an actual are part of this invisible parasite. From one fibrogot to another, when the going gets tough we're all trying to get that egg out of the floor boards with you. I recommend you try the keto diet. Ask your Dr to refer you to a dietician to start a meal plan. I've been on it for just a week and although my spasms and muscle pain is still hanging about, my cognative areas are clearer. I've been able to focus a little more on this like reading, watching a movie and just sitting in my garden enjoying the sun. A week ago I could sit for one minute still, I was lost for thought, disorientated, frozen, mind fog etc.. Its not gone, but it's better. I'm counting on this keto diet, I actually think it's working.
Please watch 'The magic pill' on Netflix.
May seem expensive but if your doctor can help, you can get a support worker to help research.
Basically you have to cut out bad carbs. Just eat
Meat
Fish
Good fats
Seeds
Nuts
Veg
Dairy
The only catch is to eat organic and grass fed meat. Because non organic produce is grown by being fed on high carbs and other cancer, disease triggering ingredients.
Please do give it a try. By not spending money on carbs, the keto plan becomes affordable. But it's still a bi*tch to know that the actual medication to treat AND Cure many illnesses is good organic un processed food but comes at a cost.
This is why young kids and teens are on antidepressants.. Processed, chemicals, and lack of healthy stuff that helps the body and brain function.
It's quite sad.. If you try the keto diet.. The next time you shop, after several shops you'll notice how much junk is actual filling up our supermarkets.. Rows and rows of packet food, starchy food, rows and rows of carbs to fill you up for cheap, rows of sugar. It's all poisen.
You might be a healthy option individual so I'm just suggesting everybody watch 'the magic pil' see what means of treatment we can help ourselves with. I just want everybody to be healthy and happy again. X
If it works, it works! A majority that benefits from it can also have the right to fight for change so that we can eat real food for less. We deserve that.
Guest anita80306
Posted
Please do message me anytime, love.