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Heavenhelpme

New member
Joined
Aug 1, 2016
Messages
1
Reason
DX FIBRO
Diagnosis
07/2012
Country
Uk
State
Northampton
Hello,
I am sat here worried sick and rather scared. I am 45 mum of 3 diagnosed with eds and fibromyalgia 4 years ago. I was diagnosed by a rheumatologist who I never want to see again
She was horrible, belittling and rude. She basically said to go home and live with it, which I have done. Nobody listens to a word I say. They just think I take pain relief everyday for the craic. The past few days my legs have been really painful and really stiff. I feel detached from them, like they're some awkwardly placed external body parts but not my body parts. I've been taking cocodamol 30/500 and ibuprofen. It's not touching it at all.
I am fit. I walk 6/7 miles a day but struggling to walk round the house. I need to grab things for support all the time. It's terrifying and I don't know why.
Is this normal? How can I fix it? My husband is getting so cross with me because I'm a miserable f****r - I'm not though. I am tired, worn out, fed up and thinking of ending it all. Which I know is very wrong. Can anyone pick me up, shake me and tell me what's going on please. Thank you
 
I am feeling rather dismal myself, I can tell my neurotransmitters are low, I'm scared, upset, wary, uncomfortable, anxious, feeling doomed, feel like I'm about to loose control, feel like I'm in a nightmare, feel like I'm the only one on the planet. I feel like everything is wrong and going to get horribly worse. I have that overwhelming feeling of being unsafe. I'm still struggling with walking, only my meds help. This is the sickness making us feel hopeless and amplifying all the wrong emotions. My family is perpetually unpleased with me as well. For some reason the 'normals' really have no clue how we are feeling, they think it's just a few light aches every now and then. I think we have just not found the treatment that we need yet. I think people believe fibro is just another name for someone who has unprovable pain and therefore just in it for the drugs. I don't know the way out of it either. But you must take care of you first, ignore the rude comments, take a lot of time off to heal, get as mentally and physically healthy as you can and be kind to yourself. This disease is horrifying. It can make you so sick you feeling like you can't take anymore. It wreaks lives. It causes so much emotional pain. It makes people distance themselves from you. It takes the joy out of doing the things you once loved. It destroys so much. All you must focus on now is surviving until doctors can figure out how to either fix you or make you feel better. I have never met anyone except my doctor and her staff that understand what I'm going thru. Well they understand it more than everyone. Other than that I know no one who understands and sometimes they become very frustrated and angry with me just because I don't feel well on that particular day. I don't understand why when we are so sick and need support from people who supposedly care about us turn on us instead. I think someone of them are trying the 'tough love' approach. I really don't think you can cure an illness with tough live. And we respond so badly to any form of stress. My mother had a mean tone in her voice when she talked to me yesterday. I began to have a panic attack and began dripping sweat and had to lay down because I was getting dizzy. If someone even hints to me about something bad I have a strong stress response. I think people think it's a fake disease and therefore people who have it are faking illness. Si people try yelling to snao you out of your faking for attention so they think. Or they try ignoring you so you'll come around and be happy and cheerful again if you spend some time alone. I don't understand why they do this. It really really late. I can't sleep but I'm afraid of waking people up. I feel guilty for staying up when I should be sleeping and getting ready for a job like regular people. When I hear the cars driving away for work in the morning I feel horrible and won't why I can't I get up every morning and get to a job like everyone else who for them it's practically effortless. I had a bit of energy today so I spend it cleaning and organizing that was desperately needed. I was feeling less overwhelmed as I conquered some long awaited chores I have been way to sick to do. I felt great for awhile. But then I realized I spent the whole day by myself and didn't spend enough time with my puppy. And everyone is sleeping and my anxiety is slowly rising every minute. I also have this weird guilty feeling that I did what I wanted to do for the whole day. Usually I'm in bed too weak to walk or use my arms, definately in a confused state of mind. Can't think of what I need to do (can't do it anyway). I don't understand how people go thru days and months and years doing what they want and have relative freedom to try new things, learn new things, explore the world, go shopping when they want. They live their life not worrying too much and find the things difficult, easy. My dad will spend all day outside working on his projects. I have a studio/workshop set up for my hobbies and I am always too sick or confused or can't focus enough to get in there and get creative. I have the odd day like today. But I have horrible anxiety that this feeling of competance is going to fail soon and I'm be stuck in bed again. When I have a good day I try to do everything. I try to fit in all that I have missed by being sick and semiconscious all the time. So basically I am having a good day getting things done but have these weird feeling, anxiety mostly that I could get too sick to function again at any minute. When I'm overly stressed I can't read, I forget what I like so I don't look up much on the computer. I can't remember yesterday. I feel overhwlemed, scared, memory blankness, angry, frustrated, and severely confused, plus I'm upset every second I am sick because I feel like I'm disappointing people or believe they think I am not doing enough to help myself. Well in actuality I try everything to try and make me well and functional again. I had 2 days last month where I was able to get up clean my studio and started working. Usually my state of mind is so poor I can't come up with ideas plus my hands shale like crazy which makes carrying out what I wanted to do very difficult. The feeling of ending it all you experienced will come and go. It flares up on me when I can't cope with the pain, when I have extreme apathy and wion't do anything because I have overwhelming feelings that I won't be able to work for long because my stamina is at a 2, and I won't be able to make anything good because my brain refuses to come up with a single idea, or it forgot what the idea was. Anyway this was suppose to be a supportive post. I just want you to know you are not alone I have experienced everything you mentioned in your post plus much much more. Maybe try to focus on remaining peaceful and calm when your husband is trying to make you upset. Just remember he is probably angry because he can't help you. And let and negativity directed towards you sweep past your body without touching it and going on its way. You're not at fault for being sick. Illness happens. So don't blame yourself or take any negative comment or suggestions and completely ignore them because no one really, except maybe the odd fibro doc can truely understand what you go thru everyday. But the fact that it frustrates them and become hostile is their problem not yours. They are the problem because their ignorance on fibro cayses alot of termoil between couples. He's probably angry at himself for not knowing what to do, and having to watch you in pain probably effects him also. They will never understand until they have it. So his anger is directed at you but it's probably due to his lack of knowing how to treat people with fibro and he's frustrated that he can do nothing to fix it. He can however do the laundry the dishes and the vacuuming while you're laid up. Ok when too much typing one too many Red Bulls. Night, no nightmares, just safe, peaceful, healing sleep.
 
Holy f*uck that post was long. God bless energy drinks.
 
Heavenhelpme try not to be too scared we all empathize with your pain....the fact you can still walk 6/7 miles is quite a great achievement.

I understand the stiffness and pain but in terms of many fibro sufferers being able to walk that far is beyond our wildest dreams.

Perhaps reduce slightly as it seems you are maybe over doing it. See if that reduces the symptoms. Remember our muscles respond differently to' normals'
so learning new limits and accepting them is key.....rather than pushing to be the old you and ending up frightened by the pain.

Stay here and learn more...ask anything you want.

Pain meds can be useless for fibro pain...if you want to explore other options like anti epileptics and muscle relaxants find a better doctor who will listen and be caring....not easy I know on the NHS>

Could you possibly afford a private consultation with someone of your choice at your local private hospital?

Directories on their websites give rheumys special interests and years of experience and you can always ring and have a chat with the secretary first and fish for info on the consultants bedside manner.

Good Luck.
 
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Willow, your suggestions are always so sound and I'm learning so much from you, and I also appreciate your compassionate. Just wanted to thank you.
 
Thank you Sierra Trout if i can ever help you just ask. x
 
There are some things you can do that will help right now; have your vitamin D level checked,(usually have to ask for the blood test). Fmers are notoriously low and vit. D and magnesium. Taking malate will help you absorb the mag. Try heat; shower, bath, pad. Try topical creams. Do light stretches a.m and before bedtime. Distractions also help when that pain just won't go away; watch a movie, pet your furbaby, etc. Combinations of these and others can add up to relief. As to family; a good place to start to explain what you are going through. Even pinterest is good at finding descriptions. There is much info. on the web that you can tap into, plus the national fibromyalgia and chronic pain assoc. (NFMCPA) can be a big help. You life isn't over, it's different. Be patient, it takes time to learn the what and how of it.
 
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