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Date: 09.08.2009
From: Monica

Subject: new to forum

Hi all
I am new to this group forum, just been looking at some posts and thought i would write to see if others experience the same problems as myself.
I have servere osteoarthritis in neck, also some in the bottom of spine. I vave spasms in neck and back, now going into the front of my neck, which hiurts sometimes when i swollow, this is a new thing, quite frightening at first. I have seen neurologists, had injections, spinal and facet joints, tablets galore that do not suit me, also they would like me to go on to morphine patches, which i have refused. They have offered to put in a spring into the spine where the disc has prolasped, i thought forget that. When i mentioned this to my gp, and others they stated they had never heard of this option.I just do not know where to turn now. I have alsorts of pains in my head, face, behind my ears, in my ears, all they say, its coming from your neck. Yes maybe, but what can you do about it, i ask. Nothing, they reply, we do not class it as dangerous, although you can have blackouts. Anyone got any ideas, thank you in advance.
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Date: 09.08.2009
From: Lynne

Subject: Re: new to forum

Hi monica sorry to hear your in pain. I have RA not what you have. There is a gal in here called jill who may be able to help you I think she's got some probs like you. She's on holiday at the moment but if you hang on a while I'm sure shell get back. Hope you get the help you need. There are some really nice people in here, they are very supportive and helpfull. TAke care
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Date: 10.08.2009
From: Monica

Subject: Re: new to forum

Hi Lynn
Thank you for writing, i look at all the problems people write on the forum, so i know where to ask and get some help, because you dont get much from the hospital, i must say my gp is not to bad. But i think even she is in despair as what to do next. Seeing her this afternoon. I know because i have to print out the appt, least i forget.
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Date: 10.08.2009
From: Lynne

Subject: Re: new to forum

Hi monica lol we nearly all have a touch of the blonde moments lol. Hope you get some good news from your GP. Are you under a specialist yet?.. Take care
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Date: 10.08.2009
From: val h

Subject: Re: new to forum

jill knows all about forgetting as she will tell u they phone her now to remind her . we all have trouble remembering things mainly where have i put my purse lol or key
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Date: 10.08.2009
From: Monica

Subject: Re: new to forum

Hi Lynn and Val

Went to docs this afternoon, i came out as if i could of burst into tears. I have seen a neurologist but he and his little army were beyond a joke, so i will not go to that hospital again. My gp states that because all the nerves in my back are so badly affected , there is nothing they can do. I have had the spinal injections, they worked for a while, then i had the facet joints done this year, but no good.I have had everything going, in the past i have spent a fortune on my back and neck, but now i am retired on health grounds, i cannot afford to go private anywhere. She now has suggested i see a physio for trying the tens machine. Also she has given me some more NSAIDS which i know i will not be able to take, i think they have given me everyone in the book, they are Arthrotec. low dose. I feel as if they would just remove the prolapsed disc, it might help, i know the arthritis is not going to go away, but i wish the pains would. I told her about my throat spasm, she said it was acid reflux. I just gave up, never mentioned the other things, she had a new doctor in with her. She told me she was explaining my case , thats why i was kept waiting. Sorry to go on, but it is nice to tell people who understand.
Thanks for listening, so to speak.
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Date: 11.08.2009
From: val h

Subject: Re: new to forum

hi u must be at your witts end with all the pain a ((((big hug)))) for u u r being so brave ask to see different hospital u r aloud a second opinion u might find some one who can help makes u wonder how they let u get so bad before deciding what wrong with u. wish could help but just at begining of this arther thing lol. lots to look forwerd to :-). sure jill will have some advice when she comes back on as she has been through most things take care thinking of u good luck
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Date: 11.08.2009
From: Monica

Subject: Re: new to forum

Hi Val
Thank you for your hug, i can do with one at the minute. Bad night with anxiety, heart going like the clappers. I have asked to see another neurologist, my gp states it would not do any good, they would not be able to do anything as to much damage. When i see physio, i will see what she says.I just seem to be going around in circles. The ironic thing about all of this, i was doing nursing for years, which has probably helped towards the condition, now i cannot get the help i need or would like.
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Date: 11.08.2009
From: val h :-)

Subject: Re: new to forum

it is a bit like banging head against brick wall u have to fight for everything just when u not up to it sorry u did not sleep it is awfull. it does help to share the pain and worry so keep coming on usually one of us up at night lol
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Date: 11.08.2009
From: Lynne

Subject: Re: new to forum

((((((((((((((((((((((((((((Big Hugs )))))))))))))))))))))))))))))

Monica I really feel for you. It's terrible that you cannot get the treatment and meds that you need. I hope the tens machine works for. Take care xx
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Date: 11.08.2009
From: Monica

Subject: Re: new to forum

Hi Lynn and Val
Thank you both, having a large whisky tonight, which i do not usually drink. But desperate measures and all that. But really i do thank you both, it is nice knowing there are people who care and understand. I hope you both have a good night and a good tomorrow.
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Date: 11.08.2009
From: val h :-)

Subject: Re: new to forum

hope u sleep well. i need drink every blue moon carefull now on so many tabs rattle enough as it is sleep well (((((big hug )))) just in case u need it tonight fingers crossed u dont
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Date: 12.08.2009
From: Lynne

Subject: Re: new to forum

Hi monica sorry they were no help for you. Have you seen a rheumatologist at all. They may be able to sort some meds out. They have sone anti TNF injections. Enbrel and Humira they are new biological ones with very little side effects. Unlike the NSARDs and the DMARDS they don't affect your stomach . They don't tell peeps about theses meds cos they cost 10000 per year. Only your rheumy can prescribe them. Cos of the cost. Worth trying take care xxx
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Date: 12.08.2009
From: monica

Subject: Re: new to forum

Hi Lynn
It has been about 4 years since i last seen my Rheumy. My gp said last time that she was going to send me back to see him if the last lot of tabs did not work or hurt my stomach, which they did. But when i seen her last monday she is now sending me to physio to see if the tens will do any good. If that does not do anything then i am going back and either ask to see a new neurologist for a second opinion, or to see the rheumy. Its not fair to my husband, he gets upset with seeing me upset and in pain. I have my faith, that gets me through most days, but being human, i also get downers, like most of us do. Have a good night, pain free if pos.
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Date: 13.08.2009
From: Lynne

Subject: Re: new to forum

Hi monica
I would definatly ask to see a rheumatologist as well. They are far more ecperienced with the meds for arthritis than your neurologist. There is no reason why you cannot have both. And again your rheumy is the only person who can prescribe the new Anti TNF meds I not sure if your neurologist can? Our jill in here keeps being told there's not much they can do but she doesn't stand for that ... Does not take no for an answer which is a very hard thing to do when your in pain.
Please think about it. Take care xx
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Date: 16.08.2009
From: fedupandinpain

Subject: Re: new to forum

Hi all Im new to this group Forum Ive spent a while reading through all your messages and a lot of what ive read has made me feel easier about myself. Ive got O.A in both knees both ankels and my right shoulder. Im on the operating list to have knee replacement done, Im 61 and scared stiff of the pain involved, will I be able to cope with it. Last year I went in for day surgery on my knee where they put a scope inside and do a washout, this was quiet painful afterwards and I know this op. will be worse. I think its fear of the unknown, I dont really know what to expect.
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Date: 16.08.2009
From: Lynne

Subject: Re: new to forum

Hi Fedup welcome to the forum. I have RA and have had a hip replacement. Not had the knee done yet!!! sure someone on here will give you some advice. there are some really nice people in here who can offer you help and support if you require it. Take care xxx
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Date: 17.08.2009
From: Jill

Subject: Re: new to forum

Hi Monica...Jill here... Ok I have 3 discs in my neck have gone, they tell me its Cervicl spondylosis...posh word for wear and tear of dics, I also have degenerative discs diseae in all mt spine... I read your posts to the gals(lovely arnt they, they r my ickle m8s) anyway, regards to that prolapse, which in the past ive had many, terrrrrible pain that is, so my heart goes out to u.... then something triggerd off Reiters disease in me 2002 diagnosed, and those prolapsed discs Dissapeared due to the Reiters diseae, there for I had at first two discs in the lumber region go...they operated(op called Dynesys...was this op offered to u?? took me a while to recover due to complications of having Reiters on top ofArthritis, but was best descion I ever made...... however, another disc above op site had gone too, so recently seen spine surgeon and will prob have Fusion(scared etc) or he can do another Dynesys...its like a scaffolding system, with elastics etc, to support the spine and keep where the disc shld be Open...stopping the nerves getting impinged etc...hope this makes sense to u...however if U keep having prolapsed discs U can have them Shaved, mu best m8 did..... also the Morphine patches u mention I also had, was gr8 for a while, helped a lot, now im on Zomorph tabs...best ever, keeps pain at bay, on very high dose tho.... dont be scared of the patches, U must need them.

alos I tottaly agree with Lynne u Must go see your Rhuumy....4 years is too long, mine cant help me any more to be honest, but my biologics nurse is gr8...I am on the Anti TNFS like lynne talked about...costly, so U need to fight to get them... dont give up.... please go see your rhummy.... they cant do much for my meck either... and the sypmtoms u describe is what I have too...altho I havnt noticed the throat spasms...however, I also have Thyroid probs, which was partically removed in 95, but is now regrwoning back.... thyroi can be part and parcel to Arthritis, so mb have that checked out in case its that...when I swollow, i feel a lump and it aches..... hope this helps and huge ((((Hugs 4 u)))))

love Jill x
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Date: 17.08.2009
From: Jill

Subject: Re: new to forum

Hi Fed up..... I had knee wash out on both, I know that was painful...so know what u mean....my daughters work colleague recetnly had total knee replacement(might need tht in the not too distant future also, but got other serious stuff going on) she said best thing she ever did.... of course u will experience some knee recovery pain, who doesnt after an op, but I know tht once u give your self time, U will feel like a new woman... fear of the unknown is a fair comment.....U must also make sure u get the correct pain meds to help u get over the op...what meds r u on at mo? so please dont worry about your op, Remember, no way can it be as bad as the pain u r having now ? so think about tht, Being Positive is Everything....take care and (((Hugs to u ))))

Love Jill x
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Date: 17.08.2009
From: Monica x

Subject: Re: new to forum

Hi Jill
Thanks for writing. After reading about all your problems, mine seem easy, but i do have a lot of pain really. I am a present waiting to see the physio again, this time for the tens machine. I have prolase between L4/5 L5/S1. in Lumber plus severe arth. In my neck as you say CS the posh wording for arth. C4,5,6,7. The neck drives me crazy. All the different types of nerve pains i get in my head, face, neck, and shoulders. Then there is the numbness,and giddiness, i feel sometimes i am going to have a stroke. Then i get anxiety. I have had the spinal injections, i have lost count to how many, they did not work towards the last few. I have had accupuncture, no good, facet joint injections, no good, all the NSAIDs i cannot take, i have a sensative tum. The morphine, i felt sick, giddy, which i suffer from because of the neck, i can have blackouts, so the neuro tells me. As yet no blackouts, thank the lord. My gp states there is nothing more they can do because the nerves are just no good, now, my toes are numb on both of my feet, but she will not do anymore. Once i have seen the physio and if it does no good, i am going to ask for another opinion, as i did not like the docs at the Cov and Wark hospital, waste of space. Also my neck went into spasm at the front, which the pain consultant did say it can happen. It hurt to swallow also it felt as if the muscle was being pulled back. My gp states it is through all the acid reflux i get, but i know it is not.
It is lovely to know i am not on my own. not that i wish for anyone else to have pain, but i do realise there are alot of people out there alot worse than me.

Thanks again
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Date: 19.08.2009
From: Jill

Subject: Re: new to forum

Your welcome Monica...please make another appt to see your rhumatologiost ASAP... 4 years is far tooo long....at night I use two special pillows...one is a V pillow, that really supports my neck, so there r no gaps... also I have a long pillow, like a sausage, 5ft long, that supports my elbows when im on my side, and I put my knee over it, supports my knees, basically supports my weight when sleeping on my side.... aslo i get numb toes and fingers 2 ,when sitting too long....happens on the computer too, horrrible isnt it..... please get refered bk to a rhummmmy ok....let us know how u get on

Love Jill x
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Date: 28.08.2009
From: Lynne

Subject: Re: new to forum

Hi monica how did you get on any luck with a rheumy ???
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