Fma sufferer with new symptom

[sheilabites]

Hi hope your all good today, I have had fma for over 3years now and have now got damage to my nerves system, does anybody else have this? Also Barrett's Oesophagus is this all due to fma, and do you think I should let Dla know about the new symptoms , the fma pain is enough to deal with without these new symptoms at moment I only get low Dla, would love your thoughts on this , your grearfuly Sheila xx

[Sorebones]

I have Barretts too. I hadn't thought about any connection to Fibro, until now! I tend not to think about the Barretts as its under control. But I was diagnosed with it a few years before my Fibro diagnosis.

What kind of nerve damage do you have? Has your Dr said that it's because of your Fibro? I'm sure many forum members will be anxious to hear about that as the present school of thought is that Fibro doesn't cause damage to the nerves, but many on here would disagree. Would it be possible to expand on your post a bit?

Thanks 🐸

[sheilabites in reply to Sorebones]

That's fine I don't mind, the nerve damage is in lower knock and right shoulder, when the pain is at its worst it travelle down my arm to my hand and can also go up into my face , the back of my eye then the migraine starts, my GPs say it can be the fibromyagia , but can't be sure , but I never had this proplem befor x

[Janet28]

Hi sheilabites yes I have the very same. Nerve damage in my feet and lower back I've been told but I just presumed it was because of Fibro, but I do have Arthritis also but it wouldn't surprise me at all to find out that Fibro actually causes nerve damage.

Peace, luv n light

Jan x

[sheilabites]

Thank you Jan x

[Lou1062]

Yes I have nerve damage, my neurologist said it was possibly caused by lack of vitamin D, I'm on a high dose now but the damage is done x

[Greenpeace]

Hi sheilabites ,

To my knowledge, Fibro does not cause nerve damage. To have nerve damage something hard has to press on, or trap the nerve, i.e. Bone, and muscles surround bone. That is why they say that Fibro is a muscular disorder. I suppose it could be feasible that muscle could go into spasm, and cause the bone to momentarily press on the nerve. Also, many people have other illnesses along with Fibro which could potentially cause nerve damage. When you get a referral from your GP about diagnosis of Fibro, it's to a Rheumatologist (someone who deals with muscular disorders) only very rarely do you get a referral to a Neurologist,first off ( someone who deals with the nervous system). As you probable know though, Fibro is a syndrome with many disguises so anything is possible.

I also suffer from Barrett's Oesophagus. I have had it for over 15 yrs way before I even had heard of Fibro. Barrett's is caused by acid reflux overflowing into your Oesphagus and changing parts of the normal tissue lining into abnormal tissue. It is a pre-cancerous condition that has to be monitored regularly for the rest of your life. There is only a very small chance that it could lead to cancer of the Oesphagus, but it is better to be safe than sorry. I don't think that the symptoms of Barrett's would warrant you notifying the DWP.

If you have officially been diagnosed with nerve damage, and it's affecting your mobility, then I certainly would notify DWP.

Please note that I am not a Medic, and this is only my own knowledge and experience.

Take care.

GP. 😊

[Cookie72 in reply to Greenpeace]

FMS affects the muscles tendons ligaments & nerve endings doesn't it, this was told to me by Proffessor Daviis who is a Proffessor of fibromyalgia from Guys hospital he was a wonderful pleasant person unfortunately he died only a couple of years ago could be longer cos times flys by so quickly doesn't it, he also helped me with my teeth I was in so much pain I wanted to jump off a bridge, he explained all the nerve ending from my teeth were inflamed & nothing could be done & chances are I wouldn't go away that was and would still be there even if I had all my teeth out, that was roughly four years ago and they are still the same I have to eat with plastic cutlery I can't let anything metal touch my teeth, I'm 74 & have had most of my problems since I was 11yrs of age, only then they called FMS muscular rheumatism ....luv n hugs to xxx🐿

[Greenpeace in reply to Cookie72]

Hi Cookie72 ,

This is quite weird! I was just thinking about you this morning, and wondered what had happened to you. Your name just popped into my head out of the blue, and here you are answering my reply. You used to post a lot, and give lots of interesting advice. I hope you're doing as well as you can be with Fibro.

What I said about Fibro and nerve damage was just my own opinion, and like us all, I keep on learning about Fibro. I certainly wouldn't like to argue with a Professor, even if he is dead, lol. 😀

Wishing you well, and hoping to see you around the forum.

Take care.

Love GP. 😊

[Cookie72 in reply to Greenpeace]

Hi Greenpeace how are you , I remember writing you all those years ago, I’m 80 now still got my marbles how about you are you managing to get by take. Care God bless 😊

[Greenpeace in reply to Cookie72]

Hi Cookie72 , great to hear from you, and that “you still have your marbles”. In these trying times every little helps. lol.

I’m 6 yrs older now and thankfully not picked up any more debilitating conditions, so managing to get on with life as best I can.

As for “my marbles” sometime I question whether I still have any…😂😂.

Take care & God Bless you too Cookie. X

[sheilabites in reply to Greenpeace]

Thank you so much x

[ukmsmi4]

Hi Sheila

Can't comment about the Barrett's itself as sorry but I've never even heard of it, even though I do have acid reflux.

I have had ME for a long time which is a disorder of the nervous system. Also had shingles which has left damage to the nerves. But I've only been diagnosed with FM for about a year so for me it's difficult to tell from experience as I believe my nervous system was already under attack. Though that said I'm not convinced that FM doesn't affect it.

As for the DWP side of things. My understanding is if you are on ESA you only need to inform them of new conditions or symptoms either at time of renewal or if you think the change in condition will affect the amount of your award. Say for instance it means you can no longer work at all so you have no other income any more.

However, as I understand it DLA or PIP are based on how your condition affects your daily life and is not related to your income. That being so I imagine if it changes how mobile you are or perhaps what you would score on any of the descriptors in some way, then yes I would imagine it is at least worth letting them know. Especially if you would get more points and that would take you into enhanced rather than just standard. After all the worst they can say is "we don't need to know that". Though if it wouldn't make any difference to the points you are awarded then I wouldn't bother until renewal of your claim.

Having said that I don't yet claim PIP so it might be worth getting advice from someone who actually knows or who already claims it. What about Janet the benefits admin lady on this site.

Gentle hugs, Margaret.xx

[Rose54]

Hi

Barret's does not effect mobility or care so would not make a difference to DLA and is controllable with meds and yearly check ups.

As some point your DLA will be changing to PIP depending on your age I would wait till they send you the form for PIP.

If you’re on DLA and were 65 or older on 8 April 2013, these changes won’t affect you (you’ll stay on DLA and you don’t need to worry about PIP.

After 65 and on DLA you stay at that rate and DWP will not increase it for any reason .

Hope this helps

Rose

[rosewine]

Hi sheilabites . it sèms many people on the forum have Gerd and some have Barrett's and many have IBS and in my mind they seem to be somehow linked into fibeo but that I only my theory.

Unless you feel you condition has got much worse I would be a bit careful about contacting the DWP as often think can trigger them inviting you to claim PIP instead of DLA. Pip has only two care components which is the equivalent of middle and higher rate DLA. The descriptors are also slightly different. You can go the Benefit and Work site and take their PIP test to see how many point it looks as though you would score which might give you a better idea of how you would stand.

Pip really emphasises how your illnessess effect you in in your everyday life and what assistance you need not how many illnesses you have. Many thing like moving around indoors don't seem to have the relevance they have in DLA. I would certainly look into it more f irst. Good luck with whatever you decide.x

[TheAuthor]

Hi sheilabites

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 have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read of your nerve damage and I have damage to my sciatic nerve. The nerve has become permanently compressed. I also have GERD which is similar in some respects to Barrett's Oesophagus. However, according to ''The Patient'' website it can increase your chances of Cancer of the Oeophagus unlike GERD.

I have pasted you a link below to the barrets-oesophagus website:

patient.info/health/barrett...

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

All my hopes and dreams for you

Ken

[sheilabites in reply to TheAuthor]

Thank you Ken, your words are well needed Thame care , x

[TheAuthor in reply to sheilabites]

x

[Hidden]

are you able to emphasise the nervous system damage? has a doc confirmed this? If they have then tell DLA everything that changes. I only get £33 fortnight on ESA at present but I have now been accepted for early retirement and have sent them my report from the assessor which they are considering..DLA and PIP & ESA wont, contact you to increase your money they only want to lower it so fire everything at them to keep your benefits. I am looked after by a local Welfare Rights Lady, she is so knowledgable.