M.e or fibro? I'm not sure

[Justice1982]

Hi all.

I'm new here. I've just received my appointment for my pip assessment (even though I asked for a home visit due to severe anxiety) and I've told them I have M.E/CFS but also fibro fits with my symptoms. Problem is that when I was diagnosed 15 year ago both these illnesses were even more obscure. Fibro was never mentioned to me back then and I'm not really sure how to explain this at the assessment. I know they are very similar and I do suffer terribly with fatigue but if I'm completely honest it's the pain I can't cope with....so is that more likely to be fibro? Any help or advice would be greatly appreciated x

[ukmsmi4]

Hi Justice1982

As far as your PIP assessment is concerned they will go by what your doctor (GP or consultant) has diagnosed you with. They will want to see documented evidence of that diagnosis and they usually want to see the most up to date information.

Are you saying that you were diagnosed with ME or CFS fifteen years ago but you are now also suffering from a lot of pain. If so it's a myth to assume that just because you have pain it can't be ME or CFS. They can both involve a lot of pain, my ME always has. But on the other hand it's also a myth to assume you can't have both conditions. I do. I have ME and Fibro and other things besides.

If this is the case you need to speak to your GP and explain what new symptoms you have. GPs can diagnose Fibromyalgia or can refer you to a rheumatologist for a diagnosis. If they say you don't have fibro then presumably it's just your ME getting worse.

You might be lucky enough to get to see your GP before your assessment and ask for a referral though. In which case you could put on your form or say at the assessment that you have a referral to be assessed for a possible diagnosis of Fibro.

If you can't get to see anyone in time before your assessment, then the best you can do is say you have new symptoms since your diagnosis and are going to speak to your GP about it. I would advise you to make an appointment now because even if you don't see your GP before the assessment you should be able to do so before you get your letter with your decision. This usually takes about four weeks or so after the assessment. You can still send in any updated documentation in that time in the hope they will take it into consideration.

Hope that helps, Margaret.xxx

[Justice1982 in reply to ukmsmi4]

Hi Margaret

Thanks for the advice.

It isn't new symptoms, I've always suffered a lot of pain but 15 years ago the professor I saw said it was M.e. My knees and shoulders pop in and out of socket regularly and my muscles just shut down. I'm housebound the majority of the time. I got a lift to and from the last assessment due to my anxiety and mobility but it made no difference to the outcome. I can't even contact them nor my doctor until Tuesday now so I'm left to stress myself out even more so for the whole weekend. Sometimes I wonder if it's even worth the extra grief as I know I'll be refused yet again. Sincere thanks for your help though. Xx

[ukmsmi4 in reply to Justice1982]

Apologies, it was late last night when I typed that reply and looking at it again it's a bit blunt isn't it. I didn't even welcome you to the forum. In my defence I was tired but wired as I have been most nights lately. But apologies and welcome.

Oh that's interesting about your joints. Sounds like you have hypermobility if your joints pop regularly. My understanding is that although not a symptom of ME itself, that can indicate EDS which is one of the co-morbidities that commonly accompanies ME or CFS. Do you have a diagnosis for that or has it even been investigated. These links may give you a bit more info.

healthrising.org/blog/2015/...

solvecfs.org/guest-blog-dr-...

edhs.info/symptoms

With regard to your current assessment though you might still have time to get a home visit. What you will need to do though is contact your GP on Tuesday, explain the situation and ask them to write a letter explaining why you need a home visit. They can fax that letter to Atos or whoever is the assessing body in your area and give you the original. But what I would still do is post a copy of the letter to them as a belt and braces job.

It can work out as this is what happened to me just before Christmas for my ESA assessment. My GP is very supportive. When my appointment letter arrived on 22nd December for an assessment centre, despite asking for a home visit, I immediately contacted my surgery explaining the urgency. The receptionist passed a message to my GP who, bless her, immediately drafted the letter and it was faxed to Atos on 23rd December. I picked up the original between Christmas and New Year and posted a copy to Atos as well. Next thing I knew was Atos contacted me by post saying no assessment required at all. So it can work even over a bank holiday. If I can I'll try and find the fax number they gave me when I get up (still in bed this morning).

I know it's easier said than done but try not to worry or stress about it as it will only make you worse. You're not alone, they do this sort of thing all the time. My brown envelopes always seem to arrive on a Friday and things like this often seem to arrive over bank holidays. I swear they do it deliberately just to make things difficult for you.

I would still recommend you persue the new symptoms with your GP as well. Again I was in a similar situation with my PIP assessment. My spasms, twitches and jerks had been getting a lot worse so my GP had referred me to a neurologist. I hadn't had the appointment before my PIP assessment but I was able to give them a copy of the appointment date which all added to my folder of evidence.

Good luck with it all, gentle hugs, Margaret.xxx

[ukmsmi4 in reply to ukmsmi4]

PS. I should of course have made it clear, I am not a medical professional of any sort and you should, of course, speak to your GP about the possibility of hypermobility (or about any new symptoms) as it is only my laymans opinion.xx

[Justice1982 in reply to ukmsmi4]

Thank you very much. I've been on this site for less than 24 hours and the advice I've been given from here has been more insightful than 35 years at my doctors surgery! I've never been told any of this even though I have repeatedly told them of my worsening condition, best they've done is throw more painkillers etc at me. I've never once been offered a referral about my joints and I've certainly never even heard of hypermobility. It's blatantly obvious that my doctor either doesn't know what she's talking about or just doesn't care. And I'm certainly not getting the support I need. I will call them first thing on Tuesday and ask for a thorough examination with a view to a referral. I can't possibly go into an ATOS assessment with all the wrong information so fingers crossed they actually sit up and pay attention this time (that's if I can even get an appointment) once again many thanks. Xxx

[bluebell99]

Hello Justice1982 and a warm welcome to our friendly fibro forum where you can find help, understanding, support and advice.

Have you seen ou mother site fmauk.org ? Here you will find a wealth of information, including guides and links.

Have you rung the DWP and asked again for a home visit? They may need a supporting letter from your doctor but should consider your case. Sometimes they say you have to go to a centre to see if you persist because of your conditions. It is a testing game to them.

It is the same with distance to travel, if they will not accept a home visit, ask for the nearest assessment centre and for the earliest appointment to be mid morning.

If you are granted a home assessment, make sure you are not alone, ask for a family member to be with you or a close friend. Let them open the door or suggest a cup of tea.

If you have to go to the assessment centre, DO NOT GO ALONE, this is very important.

Also DO NOT GO BY PUBLIC TRANSPORT. you will be asked how you got there and if you have said on your form you have mobility difficulties or suffer anxiety, they will say using public transport would not be used with these conditions.

Good luck with it all.

X

[Justice1982 in reply to bluebell99]

Thanks for the advice. I've been to an assessment before and was denied, I got my closest friend to accompany me and he drove us there and back but it made no difference to their decision. I'm not holding my breath this time either. I only got the letter on the morning of good Friday so they've made sure I can't do anything until Tuesday. Problem this time is I cannot get a lift to the assessment and I know that because of my anxiety and how I completed their former that it will defo go against me if I have to use the bus. It's got me in a panic already and I'm really not sure I can even face it tbh. Don't know what I should do for the best. Much appreciated for your help. Xx

[TheAuthor]

Hi Justice1982

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you have been denied a home assessment my friend.

I am aware that some members have rang the DWP or assessment provider and have been allocated taxi's that have been paid for by the DWP for their assessments. It may prove beneficial to ring them and tell them that you simply cannot make it without transport and see if they offer to pay for a door-to-door taxi for you?

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

[Hidden]

Welcome. To our friendly forum as our author ken and admin have already give you all the great information i dont need to do that. So very big welcome .

We are here for support we have a brilliant team. We will give you all information you need and help you on your journey good luck xx

[Shadows-walker]

please lock your post! 😊

[VintageMustard]

It’s now 2 years later and I’m wondering how you got on? Have you seen a hypermobility specialist? University College Hospital in London has a specialist department.