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susan

New member
Joined
Nov 21, 2013
Messages
8
Diagnosis
3/2012
Country
UK
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Hertfordshire
Hi Got diagnosed with fibro last march but really put up with it a lot longer than that not understanding why i suddenly end up with chronic pain in the legs and through out the whole body. Think it reacted to having a bad back. Walking as if i am a 90 year old and even sometimes they walk better than me. Had to go on sick leave from work. Always worked but my body would not let me.
Could not sleep restless legs, could not get comfortable. Tired, irritable, sore and ending up crying at the slightest thing it was not me, always been active (snowboarding, walking, biking, hiking. Been to a lot of countries, helping out in Africa with children. ) Now kills me getting on a bus, take my dog for a walk 15 min walk now takes 1 hour ridiculous.
It was mostly in my legs but now as finding it out typing its in the fingers, wrists. Sitting rubbing and squeezing. Ending up with small bruising hands and legs, felling of numbness but knowing its not numb. After a bad attack of pain where the pain has been its sore to touch its like I've been in a fight with an elephant.
I could not work with my employer any more and also this was my place of board as well,
I went to live with my cousin who is disabled, as my condition was easing not gone never gone have bad attacks less and would not last as long still chronic but put up with it. So thought was just a something had to put up with, did not like being on pills, as did not matter did not help with the chronic pain anyway. Yes always have the habit of saying i'm fine when it's not really. Sorry to go on and on.
Thinking everything is fine went back to work but as a career, putting up with the pain, but started to get worse again, pain more chronic lasting longer and ending up not able to look after myself mind any one else physically or mentally.
NO job feeling useless in pain how many blood test do you need before yes their is something wrong nothing comes back in the blood, so feel like is it in my head, staying with friends at this moment had to go on ESA did not know if i was entitled to anything
but getting something but feeling like a scrounger. But knowing how do you tell your next employer that I might be able to work today but need time off as my body will only let me do so mush with out being in pain. How do you explain to government or the doctors and specialists the more i do the worse it gets and the longer it lasts. Time you get appointment the symptoms have eased, its taken 5 months this time without being in chronic pain all the time and still pushing myself to get out of bed and take the dog for a walk, knowing i have to not only for my dog but for my own sanity.
I do know the more i do, the more constant in what i do the more the pain and longer it lasts. Really sorry this is long.
 

sassy13

Active member
Joined
Nov 18, 2013
Messages
51
Diagnosis
06/2011
Country
USA
State
Tennessee
Hi Susan,

Thank you for opening up and sharing. I just joined the forum a couple of days ago and I have felt support and understanding. It is hard to talk to people about something they cannot understand.
Do you take anything for Fibro? I take Lyrica and Tramadol for pain. I tried the narcotic pain management route. It helped ease the pain but then I became addicted and it was just one more issue. I was able to get off them, thank goodness.
I had severe pain in my pelvis too. I had my SI joint injected and finally I can sit on my butt without agony.
Do you see a Rheumatologist? I found mine very helpful. Also, is your PCP understanding? Ii has to change doctors because the one I was seeing literally thought I was crazy and depressed. He refused to give me further treatment until I went to the local psyciatric hospital and got evaluated! Well fortunately I was not admitted and I fired him and got a new physician. ( i have all my medical records sent to him just so he can see i actually have a problem not just some crazy depreesed person, sorry but im still ill with this man!) My new doctor knew immediately it was fibro. I must have had a look of doubt on my face because I was not sure it was not even a disease. She looked at me and looked at me and said it is a real disease. We may not understand it comepletely
But it i s real. I did not think that was all it though because some of my symptoms just did not line up. Because I already had an underlying autoimmune liver disease called PBC,very rare, I was sent to Mayo Clinic to the leading expert on the disease. Fortunately my PBC was in remission. He told me to go to a rheumatologist. It took six months but I finally got into a good one. Not only did I have fibromyalgia, but I had psoriatic arthritis also. I'm glad I went with my gut, because deep down I knew there was more to the story.

It feels so horrible to feel old when you are so young. I'm only 44! So why do I feel 90? I was unable to do anything yesterday and it is so depressing. Today, better. I have found I have to take this disease day by day and even moment by moment. I think that is one of the hardest things. I hate making plans only for them to fall through due to pain and fatigue.
I'm glad you have friends to stay with. This is such a difficult disease impacting every part of your life. It is great to have friends, but too, you can always go to this forum and relate to others going through the same thing.
 

MizzDeeDee

Distinguished member
Joined
Sep 24, 2013
Messages
129
Diagnosis
01/2009
Country
us
State
Va
Hi Susan,

Welcome to the forum! I'm sorry to hear about the troubles you're having, though they're all too familiar. Like you, I was a very active person. I think that's one of the hardest things to digest, when you lose that activity. I can tell you over time it gets easy to deal with mentally, but it takes some time to adjust.

Just remember that what you're feeling is normal, in terms of this is what a lot of fibro suffers deal with. You're not alone. I've found this forum to be a great supportive tool when I'm feeling ill or down. I hope that you feel better, but that we can be a sounding board for you when you need it.

I think the best advice I can give is to learn what your limitations are. I know that this is very hard to do in the beginning, but once you realize what you are able to do and not do, life might be a little more manageable for you. Make sure to take time out for you, and remember that you and your well being come first. :)

Welcome to the group!
 

susan

New member
Joined
Nov 21, 2013
Messages
8
Diagnosis
3/2012
Country
UK
State
Hertfordshire
Hi Susan,

Welcome to the forum! I'm sorry to hear about the troubles you're having, though they're all too familiar. Like you, I was a very active person. I think that's one of the hardest things to digest, when you lose that activity. I can tell you over time it gets easy to deal with mentally, but it takes some time to adjust.

Just remember that what you're feeling is normal, in terms of this is what a lot of fibro suffers deal with. You're not alone. I've found this forum to be a great supportive tool when I'm feeling ill or down. I hope that you feel better, but that we can be a sounding board for you when you need it.

I think the best advice I can give is to learn what your limitations are. I know that this is very hard to do in the beginning, but once you realize what you are able to do and not do, life might be a little more manageable for you. Make sure to take time out for you, and remember that you and your well being come first. :)

Welcome to the group!
Hi MizzDeeDee
Thank you for your kind words, yes it is hard to understand that one minute its easier to walk down the street and then the next your legs start acting up, end up walking like i need a zimmer frame, poor dog ends up with a short walk. I am trying to find my limits,
but when one minute you think you are alright, next you relax or think you are going to relax the pain can last for hours. i had to give up my work last year but found what i called a less demanding one but the more i work or use my body the longer it takes to repair to a standard that's acceptable for me.
Thank you for listening it is easier to write than to talk especially when your fog brain forgets. Kind Regards susan:smile:
 

susan

New member
Joined
Nov 21, 2013
Messages
8
Diagnosis
3/2012
Country
UK
State
Hertfordshire
HI Sassy 13 Thank you for your reply
No i dont take any thing did try last year got put on amitriptyline which are anti depressants which is ment to help with the restless legs at night lack of sleep was not really working so they up them and my body did not like them and the pain killers codeine never hit the chronic pain the every minute ache pain i put up with but the chronic nothing that takes it away. Do understand with doctors i am seeing a Rheumatologist which i do like i am very funny with docors only ever went if i really needed too. Taken more bloods, at least i know i have plenty of that and it cheeses me when they come back normal sometimes you wish something would come back, if nothing comes back this time going to see a neurologist. see what happens. Your not only trying to convince yourself but also the doctors that something not right. Time you get the appointments your on the sick and not doing everyday work, the body has eased. Got to go my hands are killing today. Thanks for listening kind regards susan
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Susan'
I feel your pain and I went through all the steps your taking in trying to find that diagnosis, then still trying to find a diagnosis that made sense, until finally accepting the diagnosis of fibro. It is a long journey. I like you and so many others wished for that bloodwork to come back showing something was wrong, anything that could be fixed. It seems odd, or unbelievable that we can hurt so bad and be so fatigued, and weak, and yet our bloodwork and tests, are all within normal limits.

Then comes a step in the unacceptance, that we say fine nothing is wrong I will just keep going gunho until I drop. And so off we go trying to prove the diagnosis is wrong and we are fine. All that does is speed up the process of our condition. We do not become stronger, we become weaker and in more pain than before, and as sad and depressing as that is our brain can not understand why our body is failing.

So the final step is accepting the diagnosis. For some it comes sooner than others. Most of us have spent a great deal of money and time running to specialists in every field trying to find a reason for what is wrong, but the doctors have no answers and can only offer us pills or rude comments.
We return home more discourged and depressed, and try to live the best we can with whatever our bodies let us to have. It is not the best life but it is the hand we have been dealt.

My best advice for you is to try and relax more. Stress makes muscles tight and if they don't relax the pain becomes unbearable. When home don't multi-task like your used to doing, do things slowly and less each day. Home life does not have to be perfect anymore. Clean when your able and relax as much as possible. How you might ask? Take bubble baths with epson salt in the water, read a good book, watch humorous movies that make you laugh, spend quality time with family & friends, or neighbors. Do a kind deed for someone else, that takes the focus of of you for a short time. Don't take life so seriously and let the little things go that are not worth getting upset over. Take naps or if able go for short walks outside and enjoy nature. Sit at a window and watch nature. Try to be happy. :)

And know that we all care about you and understand every one of these steps, as we have walked them one hundred times over. Know that the diagnosis is real and you are not alone. Hope this helps you in some small way. :)
 
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bevtay678

Member
Joined
Nov 14, 2013
Messages
10
Diagnosis
02/2013
Country
UK
State
Oldham
Hi Susan I am in the same boat as you I have only just been diagnosed and I have had to give my job up as I could no longer do it as it was a heavy physical job working a 11hour day shift on my feet all day but I have struggled for a year before I finally kept going to my doctors and had blood tests then told I have osteoarthiritis then went back as medication not working I felt suicidal when my doctor sent me to see a specialist who said all my trigger points point to fibromyalgia she prescribed me tramadol and amitriplyine but still in a lot of pain I have always worked and now I am at home in constant pain claiming esa also and feel crappy and lost and going stir crazy at home not knowing what to do with myself my hands and wrists are hurting just writing now and they will go numb I am sick of this already I want to go back to my job but know its not an option what do I do I am at a loss coming to terms with this fibro that I had never heard of until I googled it back at the doctors next week and see the specialist again in January.
 

sassy13

Active member
Joined
Nov 18, 2013
Messages
51
Diagnosis
06/2011
Country
USA
State
Tennessee
Bevtay,
I'm feeling lost too. I have always worked. Now that I am unable to, I have no idea who I am anymore. I try to fill my day with activities, but I have to rest frequently due to pain and fatigue. I feel lonely all the time mostly because I am at home while my family is at work and school. I know I am going through stages of grieving and hope to one day reach acceptance.
I hope the doctors find a medication regimen that works for you. Wish you well.
 

bevtay678

Member
Joined
Nov 14, 2013
Messages
10
Diagnosis
02/2013
Country
UK
State
Oldham
Thank you sassy13 sorry you are suffering too thanks for replying I just have to work out what to do next and learn to readjust
with this I am not a good patient LOL always did things for my self and carried on regardless of pain but this is new for me so I am struggling with it at
the moment I wish you well too
 

susan

New member
Joined
Nov 21, 2013
Messages
8
Diagnosis
3/2012
Country
UK
State
Hertfordshire
Hi your right feeling that your useless far from feeling sorry, I've seen plenty people and kids going through pain, it's not just the pain it's what comes with it, not being normal, doing normal thing like going to the shop, you don't even want to browse any more because you know that you can either last 15 mins or put up with the pain so the enjoyment goes out of it. I got told by my specialist that their probably nothing that will help the entitle pain ( chronic pain ) I don't like taken tablets not that i can't just don't especially when no good. I am on esa at the minute then got to deal with ATOS soon stupid forms because the less i do the better my body is i know from not working last year being on sick leave and then going back to work but as a career i lasted with pain for 7 months but then my body could not take any more, its taken 2 months for the whole body not to be in pain everyday in everything i do. I did not have or did not have stress at all until now stressing with ATOS trying to find somewhere to rent and because i am on ESA no one wants to know.
I do know it will carm it will become less it wont stop its always their, it is weird i be sitting or standing wow that entitle pain eases am i alright but then i go back doing what you call normal without fail i do have fibromyalgia.
I DO WISH YOU ALL THE BEST hope your days get easier

.
 

Tuppence

Member
Joined
Nov 21, 2013
Messages
15
Diagnosis
00/0000
Country
UK
State
Would Rather Not Say
Susan, I had an ATOS assessment and it went well, I got the decision I wanted. If you have any questions I'll try to answer them.

Could you maybe rent a council flat? That's what I'm hoping to do.

My experience has been very different from yours, I never had a job till I started writing but that didn't bother me as I knew when I was at school that I didn't have the same strength and stamina as everyone else and I didn't expect anyone to employ me. But it must be so horrible to lose something that has been part of your life and important to you. If I had something important taken away from me the world would look so different, I don't think I'd recognise it anymore. You do seem very strong and brave though, I'm sure you can work through this, maybe there's a job you could do from home?
 

bevtay678

Member
Joined
Nov 14, 2013
Messages
10
Diagnosis
02/2013
Country
UK
State
Oldham
Hi Susan I am the same I just filled the ATOS form in unbelievable its like writing a book my hand was swollen by the time I finished filling it in
just waiting to hear back from them not looking forward to it I am tempted to see if I can get my job back pain or no pain and just carry on until I drop
I am sick of this already and I hate having to claim money as I have always worked and there is no guarantee they will continue to pay anyway its just a waiting game so depressing another thing to worry about that is not helping me at all I wish you luck susan
 

susan

New member
Joined
Nov 21, 2013
Messages
8
Diagnosis
3/2012
Country
UK
State
Hertfordshire
wish you all the best too bevtay -- it was not just filling in the form that had taken weeks but the stupid questions how do you tell them, yes i can put my hand in my top pocket or walk 100 yards now but might not later on. It's taken months to carm after having to give up another job, having the rheumatologist saying you said you where getting better last year, them forgetting i was not working had to give up that job I do push myself you have too really or you just a vegetable. But my body not taking the work any more and the next person that say,s it my age I will go mad. Its not stress i liked my jobs i love looking after people that's what i do and know i can't manage to do that for myself, i don't feel sorry for myself, just fed up fitting with my own body and everyone as well, again not knowing where i belong. kind thoughts.
You can't live on nothing i do understand i did not want this either and they way the government is at the minute it is not easy i even didnot claim
last year in between jobs no job seekers nothing, i had nothing, living with friends putting me up and even paying for my dogs insurance its mad
I was happy working , going on holidays, doing volunteering in Africa and now kills me going on a bus to the hospital. Sorry went on and on too much. Hope you are ok wish you all the best susan
 

susan

New member
Joined
Nov 21, 2013
Messages
8
Diagnosis
3/2012
Country
UK
State
Hertfordshire
hello Tuppence, Been to the lovely council, i was on their books that year on which they said would not get somewhere for about 10 years on the list.
Then having to take another job in a different county moved out the area and then returning, will not put me back on the council list for 5 years, then in their eyes not pregnant, do not have children, have not been in a violent relationship and so on on on. So i can't get on there list. Fibromyalgia in their eye's is not a disabilty. Wish you well. susan
 

sassy13

Active member
Joined
Nov 18, 2013
Messages
51
Diagnosis
06/2011
Country
USA
State
Tennessee
I am currently in the process of filing for dissability. I have jumped through the first hoop which is filing. I have seen their Drs. Susan, same thing here, they wanted me to stand on one foot, bend and touch my toes, etc. So I was able to do it that day but said over and over it may be that later today I cannot do this!
If I am initially denied, then comes an appeal. After that a hearing. I have hired a lawyer specializing in disability. They think I have a good chance. I don't think they would have taken my case if not because they do not get paid unlesss I do!
So I think it is about a 1 year process. I'm glad my husband is able to support us.
How long does it take in the UK to get a decision? Can you appeal?
 
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