Decided to come back!!!

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Hi Everyone.

For those who are new to me, I was on this site some months ago but left for certain reasons that my friends understood at the time. Things became very negative so I switched sites.

I missed you all and have decided to return.

Not having a very good time of it and the other sites were not particularly friendly so I need my old friends again!

I have had so many diagnoses over the last few months and have been very unwell. The CS is causing me a nightmare and I had a particularly bad experience with the Neurosurgeon. He decided, after a 10 min consultation which included an 'examination', that I have nothing wrong with me? Then I saw the Rheumo who told me that the Neuro had written in his report that I have advanced CS?? Left me very confused. Will tell you more about it later but the upshot is that I have also been diagnosed with Fibromyalgia as well. I also have diabetes and costochondritis among other things. The list of conditions grows and my GP thinks I have a chance of a world record?? He always did think he was funny.

So, I'm back and hope my old friends are still around and will be nice to make some new ones too.

Take care and say hello soon. Missed you all

Lyn x

Guess what? Still not entitled to DLA as I don't fit their criteria? Mind you, I've only had a 2 year fight with them so need to keep fighting for another 2 years before I could get anywhere.

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  • Posted

    Welcome back Lyn.

    I still, despite the pains pock my nose in here now and then.

    As for Neurosurgeons, I think it is part of their job to tell patients that they have nothing wrong with them and yet write the opposite to our GPs and others.

    I think our beloved coalition government are soon to abolish DLA and ESA and put everyone onto JSA which will be renamed \"Universal Benefit\". I still have visions of ambulances queuing up outsite of Jobcentres taking the sick to sign on. In the meantime heart monitors are to be placed beside every hospital bed with a direct link to the DWP. Only when a patient's heart stops will they be declared unfit for work and entiteled to a disability benefit.

    Janner

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  • Posted

    Hi Janner

    Glad you're still on here and nice to know your sense of humour still in tact! As for the Government, the only way that the Liberals would claim back any semblence of credibility would be to pull out of the Coalition and send the Country back to the polls?? Would be best for everyone in the long run! Nick Clegg got lots to answer for!

    In the meantime we will fight the good fight regardless of whether we get anywhere!

    Where's Gerry and the others gone?

    Lyn

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  • Posted

    Hi Lyn,

    We are all still here, somewhere.

    Janner

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  • Posted

    hello everyone i am back after quite a break, not intentional but i have caught up with all postings. hello janner, macca, and flutterbye, nise to see some old names popping up. i am about to ask my gp if it is possible i have fibromyalgia?? things are building up beyond my cs symptoms. my neurosurgeon has only referred me back to the pain clinic i am already on oxycontin what more do they want to put me on??. what with diabetes, hypothyroidism, anxiety attacks, high blood pressure, high cholesterol, cs and strange pains in and across my shoulders and arms??? HELP.
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  • Posted

    Hi Chris

    I've also come back after a break and this is such a friendly site and I missed my friends even if they are all bonkers?

    I've only just been diagnosed with fibromyalgia after suffering symptoms for a few years. I also have multiple conditions including diabetes, costochondritis, carpel tunnel and advanced CS to add to my existing asthma, arthritis, high cholesterol, IBS and so on and so on......

    My GP referred me to Rheumo at the hospital who told me that it is very difficult to identify Fibro with so many other conditions but the symptoms do overlap with the CS symptoms. I have a lot of facial pain and very tender spots all over my body, muscle pain etc but the IBS and Hiatus Hernia, digestive problems are all conditions associated with Fibro. I'm waiting for my next pain clinic appointment but just had all my meds changed yet again. Lyrica was causing so many problems and although it took away some of the nerve pain, the other side effects were not worth it.

    Let us know what your GP says and whether you are referred to Rheumotologist for assessment as these are the best people to assess possible fibro.

    Good luck

    Lyn

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  • Posted

    Hi Folks,

    Lyn; Gerry and Alan are around somewhere, probably burried under the snow.

    I too will be seeing the Rheumo next month as I am developing pains everywhere. At times the dizzyness is so bad it makes me vomit. My left wrist is very painful but this may be due to my worsening Tennis Elbow.

    At the moment I am like a decrepit old fart.

    Lyrica does not seem to give me side effects but when I take them with Solpodol (co-codamol) I feel really ill so I now try to leave a hour or so in between.

    I am still waiting for an appointment with Physio, I have ben told it can be three months or more before I actually receive an appointment in the post. I will then have to wait several months before I get to see the Physio.

    I have still to reply to the DWP about the stupid report from the Atos doc. The silly mare ignored most of what I said and just put down what the government told her to. \"Star-Headed Taps\"; on the ESA 50 form I stated that I cannot turn such taps with either hand, tried it can't do it. The Atos doc noticed this on the form and I said that it is true I cannot turn star-headed taps with either hand, yet still she says in her report that I can \"turn a star-headed tap with one hand but not the other\". She does not state which hand I am supposed to be able to turn the bloody taps with. Perhaps I have got a third hand somewhere, next time I'm in the shower I better have a good search, mind you I have not seen my feet for years (or other bits) whenever I look down all I see is me belly. So where this ruddy third hand is I just don't know.

    Right time to stagger down to ASDA to get some baccy, at least we have not had any snow here so I shouldn't slip and fall on my arse.

    Cheers all,

    Janner

    P S no booze for Christmas else, combined with my meds, I will end up on planet Vulcan. And we don't want that now do we.

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  • Posted

    Hi Janner

    No more vulcan jokes please, you just get me into trouble!

    Not even starting on the Atos jokes either, got turned down again so back to appeal. Also have tennis elbow and golfers elbow, left arm, and was told I will need cortisone injections if it doesn't settle?

    Lyrica made me grow by over 2 stone in as many months which not good for the asthma and arthritis and other conditions so had to come off it. On 40mgs of amytriptillyn now along with the co codamol and diazepam but waiting for pain clinic. Meds causing problems as I have developed lots of intolerances due to the Fibro.

    Let me know when you find that 3rd arm as I could do with one and would love to know where it is. The 2 I have are useless so hopefully the new one will work!

    Take care

    Lyn x

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  • Posted

    Great to see you back in here, Lynn.... :D But not good that you are still battling everything!!! *HUGS*

    It seems a few of us have more in common than just CS...I also have Diabetes and carpal tunnel.....Grrr.... :roll:

    I have just been in Hospital for 7 days on a Ketamine infusion to come off most of my meds...It was a week from hell, i am still in pain but my body is sensitive to the meds again, so i am on LOTS less narcotics.... :lol:

    I see my pain spec. in another week to review how i have been since the Hospital....I also have an appt. with my Neuro tomorrow...Not sure what will come out of that....maybe another MRI due to increase in the pain and more arm pain...we will see!!!!!!!!

    Take care everyone...Love Jassy..xx..:fairy:

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  • Posted

    Hello everybody:

    There's lots of talk on these postings about \"fibromyalgia\" I must tell you that I was first diagnosed with this - but when I told my GP. He laughed!!!

    He told me that there was no such thing as fibromyalgia - they only tell you that you've got \"it \"when they dont know what's wrong with you.

    It was proved at a later date that I didn't have this mythical condition, I had in fact CS

    I dont know if it's of any interest : But I take Tramadol through the day for my pains, and I've found that Co-codemal help me at night to sleep for short spells - I told my GP that I wasn't able to sleep because of the pain and he prescribed them, and they do help.

    I feel so much better within myself since I was awarded my claim, and I have since found out that if they ask you for follow-up report on your condition - regarding your claim - which they're entitled to do at anytime. You should write on every page \"no change\" It's then up to them (not you!!) to prove otherwise - so this means once you're been awarded the benefit, it would be extremely difficult for them to take it away.

    One of the reasons why they awarded me the DLA Mobility was because of the medication that I take - This seems to be important to them, although they dont tell you this at the time.

    Lyn: You do fit the criteria for an award, everybody does - If you feel pain when you walk from your first step - then that's it. Your walking distance would be classed as nil !!!! This is what the criteria for the award says that your condition has to be - So keep putting in your claim - put down your walking distance as \"nil\"

    The answer to be granted the DLA Mobility award is NIL !!!

    Happy Christmas everyone Alan XXXXXXXX

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  • Posted

    Hi Alan

    I have been diagnosed with both fibromyalgia and CS and also osteoarthritis among many other musculoskeletal conditions and associated conditions, carpel tunnel, costochondritis etc etc. Recently had my meds changed and am now on amytriptyllin 30mg daily, co-codamol 30/500 every 4 hours and diazepam 20mg at night. Seems to be effective for now and keeping the worst at bay? How long for, I don't know. The GP thinks I have signs of COPD and am going for tests if this cough and wheeze won't settle. They have postponed testing til January as I am back on antibiotics and steroids and they want it to settle a bit before testing as my breathing is not good. Having my inhalers changed in January too.

    Nobody has doubted the fibro diagnosis and certainly never told me it doesn't exist. The Consultant explained that Fibro is a symptomatic condition rather than a disease and is difficult to diagnose. She also told me that some rheumatologists don't believe it exists but medical opinions are changing at last?

    Regards to the DLA claim, the Atos Doc said my walking distance was 'minimal' but they still refused me!! Not heard about my appeal yet so not sure what will happen next. Watch this space??

    Take care and hugs to everyone

    Have as good a christmas as possible and keep fighting

    Lyn x

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  • Posted

    happy pre christmas to everyone. i have taked lyrica as well for tmdj which is part of the fibro family of symptoms, it is in the same family as gabapentin (the meds)which put over 4 stone on me and it has gone since i stopped taking it. i have a major symptom which no-one can tell me what it is, i have such sever pains in my ribs and it hurts to breathe, everyone can tell when it comes on me, so i am not imagining it. with all these symptome we all suffer what are we to do when are we going to get satifaction????? when will drs understand we arent faking it we are all genuine people.
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  • Posted

    hi lyn,i am new to the site,but not cs

    i too like you have fibromyalga,and amtype 2 diabetic great isnt it! i just found this site i never knew so many people suffred from this awfull condition! my self am in the 15th year of suffering with cs and it dose not get any better no matter what treatment you recieve i have been awarded my blue badge but have been turned down twice for D.L.A. but has you say keep trying...kathy

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  • Posted

    Hi Kathy

    Not been on here for a while but just had e-mail saying you had replied to my last post so thanks for that. I was also surprised at how many people suffer from these conditions and had never heard of CS before I was diagnosed. I had also never heard of fibromyalgia until an Atos Doctor, believe it or not, mentioned that I may have it when he was examining me for my ill fated DLA claim. I've now been diagnosed with COPD and prescribed appropriate meds for that as well so I have more pills and potions than Boots the Chemist. I am also still NOT in receipt of the elusive DLA and am not sure whether to put in another claim?? With the way the benefit system is at the moment, is it worth putting myself through that again. Don't think anyone is going to get a successful claim while Cameron and Clegg are dismantling the benefits systems, if they can remove entitlement for cancer patients and children, what hope do I have??

    Anyway Kathy and everyone else, keep your chin up, smile through the pain and like me, have a smashing time in the kitchen ( I can't do dishes without smashing at least one cup and a plate, my husband says we need plastic plates and paper cups, would be cheaper!!! I do wish my hands worked . . . . . x

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  • Posted

    hi again lyn thanks for such a quick response! omg you are suffering,my friend has copd and is currently in recipet of D.L.A. so give it a shot! i understand the clumbsy hand syndrome its no joke especially with the kettle lol may i ask what age you are?and what area are you in lyn?

    well hope your feeling has well has can be expected take care been nice to chat with some one whom understands this awfull condition kathy x

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  • Posted

    Hi honey I'm home!!!!

    Watch out watch out there's a Janner about.

    What a performance getting back in.

    I'm back again for a wee while. I have some news about my cs and DLA, got to go out in a mo so will come back to this tomorrow and update.

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