Pain everywhere 😩

Good morning to everyone. I try & explain my pain & anxiety , maybe a little jumbled . I suffer with fibro last 3 diognised by rheumatologist. It's seems to effect more intense lately with my both wrists swollen, pain in arms heavy & sore. Also my both thighs are painful I get so stiff I walk with great difficulty. My toes feel as if they will snap when walking around . Base of back painful & around pelvic. Neck grinds occasionally which is so painful. My jaw aches when tired. I have IBS not confined although on medication until hospital appointment for tests. ESR reading 61, prescribed vitamin D which is low. I failed pip waiting for tribunal which I'm so stressed about. ESA medical Monday , where I'm fretting there is a lift to 4 floors letter quoted 84 steps if lift breaks down. I'm so anxious , my daughter is accompanying me who is a big help to me at home which is needed with sight in one eye that's blurry on off with Fibro.Sorry it's a moaning post just wish I was positive . Grand old age of 56+. Just needed to express with feeling like a pressure cooker 😏 Thank you for this marvellous site I'm a regular reader.

16 Replies

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  • Ok let me see if I can tackle one at a time! Don't know much about how things work over there just to be up front. I would make a list of every little thing tat is wrong and let them know it all. Lift Humm toughy if it's not working tell them they are going to have to carry you up 84 stairs as it is not your fault that they can't make it available to you! 😃😏 now it's a good thing daughter is going with you. Just make sure she knows to add what you missed as far as medical goes. Now I am 50 and feel much older which I am sure you do too. As far as pain goes I am sure by now you have tried just about everything! Now for positive energy I can send you virtual positive energy and hugs. Now for getting a smile. That's easy! Just look at my post for the day! Honey even at our age George Clooney is one nice looking man and man what a beautiful smile. I really do wish you luck I am just trying to cheer you up!!!!

  • Thank you yes the picture brought smile to my pimple face , due to stress doc says . Thank you for your positive engery xx

  • You can express your your feelings to us anytime my friend. I wish you well on day of assessment, I'm sure you will be just fine, your daughter will be there for comfort and support. If they do tell you that the lift is broken, even if you could walk up the steps, no one can force you to do anything you are not capable of doing (REGULATIONS OF HEALTH AND SAFETY) It's simple you don't try and kill youself in the process, don't force yourself. This will be seen as you are capable and It's quite clearly, you are not.

    Be yourself and tell them everything, write It all down so you won't forget. They will be looking to see what you can do and If this is very very little, don't be ashamed or afraid to say.

    Pls let us know how you get on, I will be thinking of you.

    Sending lots of soft hugs and positive energy your way :)

    Good luck with your appeal xxxxx

    Hugs,

    Elizabeth :) xxxxx

  • Thank you so kind of you Elizebeth . I feel a lot better . Assement is August 6th & in a state now! Thank you for your positive engery 😀xxx

  • Your very welcome my friend, you can chat to me anytime :) xxx

    Take care xxxxxx

  • Hello my Iovely so sorry you are feeling so awful Previous replies have given you good advice. If I could add, re your Esa, ring the DWP and ask them to have the medical recorded. I did when I had mine a couple of weeks ago. Make sure you tell the assessor how hard it is for you to climb steps, heres hoping the lift is working, but if its not make sure you voice your difficulties getting up them. My hubby came with me to mine, he was a great help and often spoke up to add weight to my situation. Can I ask how you are getting there out off interest? Have you looked at the work and benefits site as there is a lot of info on there about the assessment, what they ask, what you should focus on etc?

    Gently hugs

    Jo x

  • Hi Jo, thank you for your reply. My daughter is driving me to medical 6th August at 9 in morn, dreading it if anything like the Pip I had, seemed caring I have claustrophobia in office with no windows took me to another room with windows but only had 4 points for mobility , where I need guidance to take a journey. I'm waiting for date for tribunal but CAb appointed for it otherwise I'd of left it. Doctors just say everything down to fibro , going to make appointment in morn see if I can get relief of any sort with swollen wrists And painful leg bones ..... Not sure to ring assement about lift which I panick about. This is not easy . Hope all well with you Jo xx

  • Others have given you brilliant advice. if lift not working do not even attempt to climb the stairs but have it noted that you attended but it would be a danger to your health if you tried to walk up the steps or if you really want to prove a point walk up 5, collapse be taken off in an ambulance and prove the point that you are really ill. I am so mad that these organisations are allowed to do medicals for ill and disabled people that often have no good disabled access and are up four floors. Do read the stuff on the Benefit and Works site. If you are not a member and can't access the information you need I believe you can email Janet on benefitsadvice@fmauk.org and she can provide you with some of the guides. Have your daughter drop you right outside the place and then park her car. I only give this advice as some of these establishments have cameras outside the building recording peoples approach to it. Probably like most of us you can start off walking okay for a short distance then pain and fatigue sets in so you might look okay getting out of car into building but wilt afterwards.

    If they ask you to pass things like paperwork or medication ask your daughter to do it as unfortunately they are observing every move. if something hurts say so don't try to be brave as we are all guilty of trying to cover up how we are on a daily basis and this somehow gets ingrained in us but does not help us when we are at these kind of assessments. If you are turned down always make sure that you ask for a full copy of the assessment in its written form or recorded as it is amazing what mistakes they make. if my Epileptic husband had taken the dose of meds that the nurse said he was on i would have been a widow 6 years back!

    Good luck on the day we will be all thinking of you and let us know how you are doing and how it all goes. Soft hugs, remember to breathe.xxx

  • Thank you very much for being so caring & taken the time to reply. Your reply is very informative . I have scribbled notes everywhere but never seem to put it all in one . I shall email the lady . It's terrible how these people put false information , was your husband successful with the medical ? I'm worried what they ask u to do in medical with pip lady said it want go against you to cause u pain but documents show I'd refused when I said yes but she asked few times saying ask ur daughter my daughter said if doesn't go against then. No. See how they work . Xx

  • This is weird I have just got my letter today for exactly that an assessment for ESA in 2 weeks time. It is up 18 steps and there was a warning letter about not using the lift in an emergency and to phone them if you cannot use stairs. So I phoned them and told them I cant do stairs at all and I stated this in my form and they rescheduled for a ground floor assessment 17 miles away in a place I dont know. I then said that I wanted a recorded assessment which threw the chap on the phone into a confused state and he was reluctant and tried to confuse me by asking when I had requested this and then said I hadnt requested it. I said I had put it on my form in Feb and I am now requesting by phone. Right now! They try to do everything possible to make it difficult and try all sorts of tricks to catch people out. They are very underhand and not to be trusted at all. It is so very hard when we dont feel well and are tired and confused to keep up with this nonsence dreamed up by IDS and his cronies. I now have to get someone to take me 17 miles so they will probably ask how I got there and how long it took and say I sat in the car for a long time. Sitting isnt so much a problem for me other than I get stiff joints and cant move but I get pain everywhere all the time anyway. stairs and walking is a problem so even if it is further away at least it is on the ground floor (It better be). I joined benefits and work last year and they are helpful if you know where to look but I feel I am always so brain dead confused I cant remember anything or where to look especially when under pressure. I think DWP like it this way so they can get the numbers down. I agree with what rosewine says especially about them watching you from when you get out of the car to when you leave. Have you time to request that your assessment be recorded? Makes me wonder if they look at the information you tell them or whether they use this to try to make things difficult. I am determined not to give up even though I am fatigued and brain foggy. I will fight on. I have no other choice. Gentle hugs Joolz.x

  • Are you in contact with your local fibro support group? I am a member of our local group and the person who leads the group brought in someone from the department that assess ESA and he told us all about how they can help fill out the forms in such a way that your symptoms and difficulties are stated the right way, also how someone can accompany you through the process, or they can organise a means to do it taking account of your disabilities. You can contact a support group on fibro uk's website.

    Suex

  • Hi Sue Thank you for your reply. I've asked doctor could I go to pain clinic but said long waiting list. Not sure about surpport group local think you have to travel , I will check on it if I know what I'm doing . This site is a great place when feel on own xx

  • Remember before you go for ESA to list examples of the limits of what you can do ie walk to the car but not to the bus stop, or stand for 3 minutes but not... or difficulty to brush hair, details like that depending upon how your mobility is limited. It's important not to just answer on the spot because they will not ask you to elaborate and so you may have inadvertently answered no because their question didn't relate to the particular aspect you have difficulty with. Your local support group will have people who have been through the process and will help with those ideas.

    Suex

  • Thank you for your reply Joolz. I haven't rung them just worried how they can turn it around. I suffer high anxiety in confined spaces but not sure if doctor will write a letter everything I've asked in past is no just go to desk and request medical notes which I've payed for in past for downsizing home. Nothing on there for claustrophobic. Rung left answer message with Citizen Advice but nothing back . Good luck for your medical & thank you for your reply xx

  • I am so genuinely sorry to read all of that and I want to sincerely wish you all the best of luck. I can see that you have been given some wonderful advice so I will just add that keep a diary of your symptoms and keep your GP up to date with what is happening for you.

    All my hopes and dreams for you

    Ken

  • Thank you Ken. Hope to get some sleep tonight just over anxious . Sleep well & Thank you again.

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