pain pain pain and getting passed from pillar to post , i need a diagnosis :( so depressed now

pain pain pain and getting passed from pillar to post , i need a diagnosis :( so depressed now

i am 4 months on and still no diagnosis orthopeadics passed me onto nuro now but i have all the symptoms of fibro its just getting a diagnosis which is hard as im already on a massive amount of medcations for the pain it is causing and also my scolisosis i was worried if they see the conditions worthy of benefits i mean i definetley think if it takes all morning to get out of bed and get dressed and need help dressing and showering and on crutches and wheelchair when im out !. Can you still apply for benefits while i await for the snail paced nhs to get off there ass x

27 Replies

  • Hi, yes its difficult to get diagnosed, I was going from pillar to post for 4 years, I had never heard of Fibro before I got diagnosed. yes you can apply for benefits while your waiting to be diagnosed.

    Love your cat

    Mazz xx

  • Me too,he is a sweety! Yes Iam sure that you can apply for benefits and Iam sure that you qualify for PIP as well.Have you got a local CAB near you who can advise you of all the benefits you are entitled to?Iam so sorry that you haven't got a diagnosis yet,have you had the pressure point test yet? There are certain areas on the body that if pressed cause us with fibro a lot of pain and if you have 11 out of 18 then you more than likely have fibro xxx

  • hi haribo i have not had a pressure test i have not heard about that.i was seen by orthopeadics and they past me over to nurologists but as of yet ive not had an apointment to see them :( everything is so slow and nothings happening and each week that goes by im hurting more and more the last few days well coming up to a week now my fingers would not open in the morning and im struggling to use my crutches as the pain is to much but my crutches are they only was i can get around the house,I had a fall today and now im back lying down with so much pain in my hips legs chest and back :( xx I will take a look at the fibro test ans see what it says about me thanks and sorry to be so depressing its just hard to be happy in all this pain xx

  • Good morning sweety,how are you?Dont worry about sounding so depressing as Iam struggling with depression myself so I can understand how you feel.The pain and increasing symptoms can drag you down and make you very unhappy :( I have found it helps me enormously coming on this site as there are always people to support you and lift your spirits.There is a virtual trip going on today,it's great fun and a good way to distract from all the pain and other symptoms.Would be great to see you there today :)

  • hi haribo x sorry i didnt manage to make it to the virtual trip i hope you all had great fun. I have been having a little time to think as everything has been getting on top of me and as i used to be the life and soul of all parties i felt like i had to say i was ok or better than i did feel so i didnt bore everyone with my moaning. Last night i broke down when my mum was here and she just told me to let it all out and to stop trying to be who i was just deal wih the hear and now and dont worry about whats to come we will deal with it when it comes. It did make me feel a bit happier although when my doctor comes on tuesday im going to mention to him how i have been feeling but i will not take anymore tablets i think 30 tablets a day plus the oralmorph is more than enough :(.Anyway i am going to try and come on here more often at least on here everyone understands how we are all feeling and have a chat help those who are feeling down and have a giggle hopefully when the pain is not too bad. Thankyou for messaging me it made me feel not so lost in all the fog if that makes sense xx :)

  • Aww bless you! To be honest I haven't been on the trip myself since this afternoon but will have a look in now but they have all probably gone home now :( Had a major catastrophe where my cat had poo on him and it was everywhere in the house,my poor back is killing me now :( You wouldn't have bored us with moaning,you should have heard me tonight ranting and moaning at my kids cos I was stressed! :( Anyhow,take care and I hope to speak to you again soon :)

  • Hugs. It takes time to get the diagnosis unfortunately. They have to rule out other things as Fibro is the great imitator unfortunately. I would apply for benefits now if I were you.

    Beautiful kitty.



  • Sound advice apply for benefits ow go to www, and look for the section on benefits if you send a message to Mdaisy she will send you the right information to get started..

    Hope that helps


  • thankyou for that i will find where to message mdaisy for more information xx :)

  • Definitely apply now for benefits as they are taking ages, I'm at week 21 and shill not heard anything. I looked online and found a wheelchair for £56 quid and crutches for £20 off amazon, some disability shops also take the vat off for you, have you considered referring yourself into the local authority social services ccipatolnal services?they can issues you out equipment like a toilet frame and shower chair so you can sit to have a wash, they can register you as disabled and issue you with a blue badge and orange card so you can get the vat off equipment you might need to buy. Also the wheelchair service might be bale to help.i can't walk without crutches on certain days and I do know that I need a wheelchair sometimes so I'm looking into buying one , if you can't afford it then look into suggestions I made and they can help. Have you been given any medication .? be careful as some have really bad side effects, i was on cymbalta for 5 weeks and had suicidal thoughts. Good luck and keep us updated. X x x x x

  • hi jules, i have been very lucky i got sent home with a wheelchair, a walking frame which i cant use and my crutches. The week after my occupational therapist had an extra stair rail fitted, a toilet frame,shower bar and seat across the bath so i can sit to shower. I also have a seat with bars so i can sit in the kitchen to make a drink so i have been lucky there. I have an apointment at the end of this month for a new wheelchair a long term one as the one i have was temporary and is too heavy for my mum to lift and push so ive not been able to go outside.The medication i am on is very long as i was already on alot of meds for my chronic back pain from scoliosis, i am on tramadol.amitripiline,diazapan,gabapentin,morphene tablet and liquid oral and paracetamols but i have got used to them all now although they dont seem to be helping the pain as much as id like xx

  • Me too. Thought it was neuro, he said no. Can't get a diagnosis. Stressing me out. New member

  • so when you went to neuro what did they do or ask, tests on you etc if you dont mind me asking and also where have they passed to onto now x

  • To start with I have health anxiety. Because I was getting muscle twitching, cramp and pain I had decided it was motor neurone disease. The neuro said it wasn't but told me to have my vit d checked. This was low so put me on a supplement. Still had problems went to see a rheumatologist, couldn't find anything so put me on amitriptyline. Still got problems. All bloods fine. Not been to docs for 2 months got appt. tomorrow. Beside the pain I feel my muscles are tensing up and I get a burning sensation. Pains in legs arms feet wrists hands and feet. Feel like I am back to square one. I am sure they think it is all in my mind, I know it is not. Sorry I can't be of more help. Take care

  • hi holly, so it looks like your in the same situation as me then. My doctor comes out to me every 2 weeks because i cant get out to the apointments, i personally feel that if im on 30 tablets including morphene then i must have something wrong and i just want a name even if theres no fix or anything it is the not knowing that is killing me. Orthopaedics have passed me on to nuro when they finally decide to send me an apointment in the mean time i use my crutches with my leg dragging as i have no use in it and the pain in my hands when i am using the crutches is horrible but i dont have any other way.let me know how you got on at the doctors and what they said i really hope it helps and no it is not in your mind we are in pain and there is a diagnosis out there for all of us its just going to take time :( do you claim disability or do you work holly xxx

  • Hello All,

    I have had all your symptoms of the back, hips, neck including depression, IBS and reflux. I was out of work for years with no diagnosis going from pillar to post. I would recommend a book to you entitled " Healing Back Pain' by a US consultant Dr. Sarno and will explain much better than me why this pain is happening and how you can stop it. I am symptom free and working and more importantly not being held back anymore with this debilitating and frustrating pain. If you are to do one thing this week, it is to read this book and to be reassured that what you are experiencing can be cured completely, yours sincerely spaceladybaby

  • Holly, it's really important you read this book. My brother went through all your symptoms and is doing really well. It's more important for you to find a therapist to go through your anxieties and get to the root of where they are coming from.

    There is also a forum I find really helpful. Google TMS Forum. This is a tough part of your life right now but remember you will come through it a stronger person. It will not be easy but believe me you have to work through it. I would also recommend journaling everyday. Just writing down how your day went, if anything happened that upset you or made you angry, how you feel and how the pain was that day and if it increased or decreased throughout the day. This is a very helpful practise. Good luck!

  • Hello Nikk and spacelady. Dr gave me cocodomol 30/500 and amitriptyline 25mgs. She thinks its osteo but not sure. Nikk I am not as bad as you and I can still work but it does get me down. I am the type of person who needs a diagnosis. I have had CBT but its only slightly helped. If one more person says "it's all in your head" I think I will scream. I think the journal is a brilliant idea. I will also go on amazon and look at the book. There must always be a reason for the pain. I agree stress can make symptoms worse but there are some physical concerns there. I am so grateful for your replies. Nice to know I am not alone. Will let you both know about the book. Will start the journal tomorrow. Have a good weekend. Think I will watch a comedy tonight, cheer me up. I love father ted. Ps where are you both from. I live in nottingham uk

  • just one question holly what is the journal you mentioned thankyou xx :)

  • Hi spacelady. Just ordered mind body prescription by dr Sarno sounds interesting

  • hi holly i am from bolton which is near manchester :) x I have managed to escape today for a couple of hours my mum took me to the shopping centre we only looked round debenhams and few ither shops as my mum can really push my outdoors until i get a new wheelchair at the end of the month this ones so heavy. I am shattered and nodding off as i type but it was worth it just to get out and have a few hours where my mind is taken up with nice things and i bought a nice new jumper :) x so i am on the settee now and hubby has made e a nice cup of tea (have to be careful lost count of the times i have fell asleep with a cup in my hand lol ) xx hope your feeling ok holly and hope to soeak to you soon xx

  • just one question holly what is the journal you mentioned thankyou xx :)

  • Someone suggested keeping a diary of when the pain is worse and what was your mood at the time and where you involved in any physical activity. My belief is that the pain is caused by problems with my nerve endings, but they don't seem to think it is. Take care.

  • Hi Nikk glad you got out for a short while. Retail therapy should be on prescription. These new meds, amitriptyline, are making me sleepy. I have been nodding off all day. Got loads of housework to do but no motivation. Have you been referred to a pain clinic. Hope to hear from you soon

  • Hi holly the journal you spoke about is a good idea, infact i have been doing it since june i put my normal diary stuff then pain out of 10 and mood out of 10 x.And yes we should all get a prescription for retail therapy hehe x i am on amitriptyline and they do make you sleepy i am on loads more as well so im lucky to be awake half the time but as the weeks have gone by i think the tablets are working less and less not sure if you feel the same about anything you are on ?. I have not been to the pain clinic no i dont know when im going to get there ive not seen the nuro consultant yet im sick of waiting do you think he will refer me or do i need to ask my doctor when he comes tomorrow ? x I am on facebook ,and also have email like everyone lol if you ever want a chat via anything else give me a shout but i am happy to speak on here its just really nice to have someone to chat to that understands what its like to be in pain, my family are great but i hate upsetting them all the time xxx.

  • I should get a referral to the pain clinic ASAP. They are very good and will be able to assess you. If you want to send me your email I would love to keep in touch with you. You never know I may take a trip to Bolton. The nearest I have been to you is Liverpool, on a day trip. Take care

  • Hi nikk1975

    I am so sorry to hear that you are having a rough time with this. I have read so many people on this site taking ages like you to get diagnosis. I hope they sort it out quickly for you.

    I hope your scoliosis isn't too bad? I presume it's a misalignment of the spine? And that's causing you the pain?

    You take care and all my hopes and dreams for you.

    Ken (the author) x

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