FBS (plus other conditions) Is it worth living through when you're told this?

[unhappylassy]

Hello, I'm new here and I'm in a very distressed state at the moment and don't know where to turn. I will try to put this in as shorter version as I can. Firstly I want to say that until I first started with my health problems I was a very hard worker (16hrs a day) I was not/am not lazy. (although it has taken me many years to realise i am not lazy, and now I feel as if I've been knocked right back)
My health problems started early on, and I was with an abusive partner who beat me so badly I needed reconstructive surgery on my face, had a fractured spine, and osteoarthritis in my hips, spine and pelvis, and sciatica. I also have hashimotos, and pernicious anemia, calcium deficiency and nerve damage in my lower legs.
I was diagnosed with FBS a few years ago, and because of that the pain clinic discharged me (I used to get injections for my arthritis and sciatica) I have struggled ever since, and 2yrs ago tried to take my own life because I couldn't cope and have not much quality of life.
My G.P. Finally got the chronic pain clinic to take me back on (Yes!) and my appointment was yesterday. What they said to me has left me feeling utterly devastated. They refused to treat me for my problems that they "could" help me with, but offered me a 4wk rehabilitation hundreds of miles away from my home. Don't they realise that you can't be rehabilitated from FBS? They know I suffer from severe anxiety and am under the mental health dept for that. I can't begin to describe how just the thought of leaving my family/home to travel hundreds of miles to a strange place alone for 4wks has made me feel. There were 4 members of the team, and the occupational therapist said some things that left me speechless, such as "oh your husband does a lot for you, thats a bit of a shame for him" and "are you sure you've got over what your ex did, and you're not just sitting thinking about it feeling a bit sorry for yourself". Then the physiotherapist said "if we can say get you back jogging (he is having a laugh isn't he?) We know it will not help your pain, and will probably make it worse, but at least you can say you have done something to feel proud of" What? is he telling me I am something to be ashamed of? I'd say managing to get through the day without completely losing my mind or succeeding in finishing myself off was an achievment. They have no idea how this has made me feel, I am barely able to see the screen as my eyes are so swollen, I've not stopped crying since I came home last night. Don't they realise just how s**t this illness makes you feel about yourself as a person anyway? I have every single symptom there is and more, my disgestive system, my bowels, my bladder, my muscles, my bones, my skin, I have nervous blisters, I am in a constant state of drowsiness, I talk as if I'm retarded, I have migraine that cripples me, I'm totally exhausted, clumsiness, forgetfullness, anxiety, depression. And I feel very very ashamed of the way I am, the person this has caused me to become. I can't even remember the last time I had fun. They even asked me what benefits I was recieving. And you know, I have never claimed my parking badge as I don't go out a great deal, I have only just a couple of months ago claimed my tax entitlement for my car, and that was only because they messed up my payments and I didn't have the money to buy it. If I was able to be jogging, galivanting, I'd be working, when the truth of the matter is I live in poverty, and they think I choose that over being able to jog? If I was able to jog I wouldn't have been visiting the pain clinic.

I'm really sorry for this obvious rant, but I've "muddled along" for years, almost frightened to visit the doctors as I'm always made to feel that I'm wasting their time. I thought this was going to be the one time that they would help me or at least be understanding. I look at my husband and think to myself what am I doing to him? Perhaps he would have a happier life if it were not for me and my pathetic illness. At the very least the benefit system would be better off without me being here. And perhaps my feeling were right all along when I always felt I was a person to be ashamed of.

Any tips from anybody would be very much appreciated. Thank you very much x

[hazymazy]

Well how awful for you to be treated in such a shameful way. I'm disgusted that you were made to feel this way. I'm so angry I don't know what to say. I have fibromyalgia and other problems but I'm to upset to talk about myself. Everyone who has written a comment here is correct, start again, find a new doctor who will listen and yes that will take time but keep going. Sometimes you have to make a pest of yourself,its called standing up for yourself. I have suffered for years and I'm a really quiet person and I didn't get anywhere until I changed doctors and kept going back. I feel embarrassed every time I go because I fear they don't believe me. I to was very active and had a completely different life to the one I have now but have had to adjust. I stay home so much now because I worry I wont be able to get home. Its taken me almost 2 years to claim my bus pass because of the stigma as I'm only 42 and LOOK well. Hold your head high. Be happy with your loved ones and keep on battling on. Some professional people who aren't in pain are just like anyone else they don't always understand. Fibroymalgia is a difficult and individual condition to have and at times even difficult to explain what it feels like because it can change so much. Remember you are not alone and other people in the same situation really do care. Good Luck. Keep us posted to how things progress.

[Monkey1mill]

GET NEW DOCTORS AS SOON AS POSSIBLE!  Do not be ashamed at your inabilities and need of others to help you.I have felt like giving up over the last 20 years but can't because of my belief it is a sin.I have fibro, UC, IBS, strokes, PAD, RLS,nerve damage in left thigh and arm, sciatica, depression, anxiety and panic attacks, OA, Migraines and other problems. I lived one and a half years knowing my husband of 35 years was dying of heart disease and couldn't tell anyone cause he would not have wanted anyone to know(even he didn't know as dr said not to tell him. It has left me physically, emotionally and mentally drained. Learn about your conditions, the meds and argue with the drs if you have to. It may take a while to finally get the pain to ease some. Also I am seeing psyc to help with emotions. I also do strecthing exercise, music therapy bio-feedback and pet therapy. I used to get so frustrated with inability to do things I used to do (I was very active person) but dr was right when he said I am disabled and have to accept it. Just do what you can and accept what you can't do. We are here to help each other and knowing we are not alone is a great help. Sorry so long winded but wanted you to know you are not alone, we care about you and killing yourself is never better better for those you love. After four and one half years I still miss my husband so much.  Please don't do that to your husband. God only gives us what we can handle, it may like sem like but I believe it is true. Hang in there, get new drs, and God Bless.
Monkey1mill

[kmil1999]

I too am sorry to hear that you were abused by the people that were supposed to be helping you.  You should have received additional symptom help for the FM, not cut loose from treatment for other health issues.  Having FM does not mean you don't have other illnessses.

Shame on the healthcare people that you have seen so far.  At the mimimum they need to have more classes on therapeutic communication.

Having FM unfortunately, you have to be more of an advocate for yourself than if you had another disease process going on.  

Maybe having a strong, medical knowledgable individual go with you to your appointments may be a place to start.  

I know it is not much, but maybe a little help.

Hang in there, we are here with you,
Karen

[jagr5247]

i am so sorry to hear how terrible they treated you. you really need to find a completely different doctor and start over. it may take time, but there are good, compasionate drs out there.whoever you saw is completely inappropriate.

nobody is better off without a loved one. i have to rely on my husband for a lot when i did 90% of everything around house and kids and worked full-time. i can barely get out of bed some days. i have felt worth more dead than alive. but i think of my kids and they wouldnt be, nor would my husband.

i wish i had some words of wisdom, or could take away your pain. all i can do is say a prayer and keep you in MY heart.

[unhappylassy]

I also forgot to say that the physiotherapist in the team of medics said something to me that I couldn't quite believe.

He asked me to stand, and then he asked me how long I spent sitting down per day. So I told him that I can't sit, stand, walk or lie down for long periods as they ALL cause me great amounts of pain.

He then told me I had a "seated posture" When I asked him what he meant by that he said, "very stooped, and it looked as if I spent all my time sitting down"


I felt quite insulted at what I felt he was insinuating, and asked him did he have any idea that a "stooped posture" was a classic symptom of FBS.

He then went on to say to me "well fybromyalgia is a big word isn;t it"

What does he mean by that?

He also said that our body reacts to pain (as it should) by slowing down, till the pain goes, but that is only neccesary for pain that is harming us, and that FBS is not harmful so I need to learn that I don't need to rest with this pain. That was when he went on about the jogging, etc, and said that even though it might make me feel worse, it's not going to harm me, and I'd have something to be proud of.

I can't believe how utterly worthless their comments have made me feel :(