Can anyone help me?

[beauty96]

OK so I can't have any medication cos of allergies and intolerances. I have RA and OA, hypothyroid, osteoporosis coming??? coeliac and so on, can't have anything to do with aspirin or penicillin, local anaesthetics etc. Now I have just returned from the GP who would not really talk to me except to say no one can do anything for me. I said "I have private health care". No I can't send you anywhere". I asked if "anyone could look at me and let me know how to cope with feet, spine, knees, wrists, neck etc all twisting". he said no and showed me the door. Sometimes I wake and scream cos I have nothing at night it I worse. I can feel my neck almost giving away. The orthopaedic fitter said "he can't make shoes for me anymore cos of the direction the foot has gone into". I have lost all the padding on the bottom of my feet. NO ONE has looked at any of this except massage therapists No one at all ever. My toes are all bending etc

So my question is to all of you. I am depressed cos nothing is being done. is there anyone living near Skegness or a train travel away, who would be able to look at my bones and joints and answer question about what is happening. I am happy to pay privately. Is there anyone who I can see without going via this GP. There are 12 in the practice but hard to get appointments. Can't change as no other practises near us.

Can anyone help me. PLEASE can send lists of health problems and allergies to anyone who can help me.

GOOD NEWS ?????????!!!!!!!!!*********

With the help of various folk esp the NRSA I have found a rheumatologist who is happy to see me OK £180 but a small price to pay if he can at least explain to me what is going on. I see him on Monday Afternoon. One additional point is I was asked by the secretary to scan any test results etc I have. OK Blood tests this August etc and I have copies of everything form 1990. Worth the effort. I will add that it is 1989 I fist asked for someone to help me just almost like this email. Unbelievable,

[earthwitch]

have PM'd you wih the name of a private doctor I've seen. Not near Skegness, but worth considering.

[beauty96 in reply to earthwitch]

can't find out where to read this. Gone daft.

[Barrister]

You nearly always have to get a referral from your GP in order to see a consultant privately. So if you want to go down this route you would need to see your GP at your surgery to ask for this. On the other hand, you are entitled to a second opinion from any doctor so again, you could seek out the most sympathetic GP at your surgery. Take someone with you for moral support too and point out that you have private health care. I really hope that you get your referral and that you get some relief from your pain. Clemmie

[beauty96 in reply to Barrister]

My husband always come with me, it was obvious form the start he was not interested in me. He just reviewed the prescriptions etc [food mostly] and that was it.

[Barrister]

Well that's not helpful and totally unacceptable. It's good that your husband goes with you, I always find that it helps and also sometimes it helps to write down the things that you want to say. Keep on trying and if you have to, then insist on a second opinion. Good luck. Clemmie

[Hidden]

Poor you, you are in an impossible situation, being allergic to everything. Most of us depend on medication to switch off our inflammatory attacks, but since you can't have anything, what can be done?

I suppose you could pay to see an allergy expert. Try detoxing. Try massages. It sounds like a nightmare.

I suppose that your GP who is trained to prescribe medicines won't have any other answers, so he/she must feel frustrated too. I expect there is an expert somewhere who can help. Hope you find them and tell us what you learn? Good luck, anyway.

[beauty96]

Hi Phoebe, massages are one way of keeping out of pain. I learnt aromatherapy in 2000 and now actually teach it to very small groups in my back bedroom. Mostly U3A, all of us over ???? let's say 60. This helps but why can't someone look at my knees for example. No one ever has. Or my toes etc. I feel really depressed. waking up in the night in pain is horrid. Feel better once up but then by that I mean I am not in so much pain and the pains shift slightly. Also I am occupied.

[Hidden]

Hi Skeggy,

This is awful! Have you been referred to a rheumatologist and orthopaedic consultant? Even if they can't help you with medication they should then be able to refer to to specialist OT's who may be able to help with equipment and/or supports for your joints. I believe that these days you can self refer to the social service OT for an assessment. They will come to your house to assess your needs and may be a gateway to further help. Alternatively, ask your GP to refer you to the pain clinic (or OT if your GP won't). They will offer you physio and other ways of dealing with the pain.

I know it's easy to say this but don't give up. There is help out there, unfortunately GP's are not always the best at co-ordinating these services (mainly through being ignorant of them I fear). If you can do your own research about specific services in your area and ask to be referred to that you may have more success than if you ask you GP for advise about who you can go to.

Also, try the NRAS helpline - they can point you in the right direction.

Good luck!

Judy

[beauty96 in reply to Hidden]

The GP won't do anything at all even though as I have said above I do have Private Health insurance. It costs them nothing. I do have some aids like an indoor walker, bath lift etc. Though no one seems to be able to do anything with the wet room we inherited. Will wait now till our holiday in January and as we are off to the Croydon area can look there. Skegness is a good shopping centre for everyday thing useless for this.

[hatshepsut]

Really worth ringing the NRAS helpline , I'm sure they would be able to help, they have lots of info....and they WILL listen!!! Hope things get better for you. M x

[beauty96]

Thanks I actually sent them my email and know someone is looking at it.

[lorann]

Skeggy, Have you seen a Podiatrist for your feet? Mine are doing the same thing, my toes are crossed over each other, hammertoes, bunions and no padding on the bottome of my feet. The ball of my foot is just bone under a casllous. My dear Podiatrist agreed surgery was not a good idea, but he made inserts for my shoes, by heating the orthotic insert and having me step on it, which made the impression where the bone is, which makes a pocket for it inside my shoe and takes the pressure off when walking. He had a catalog of shoes and I picked out a pair of tennis shoes to wear every day, so now it is like walking on pillows, nothing hurts! Atleast not my feet!!

Have had 8 spine surgeries and am facing the probability of another, the area that was a fusion has apparantly broken and has to have all the metal removed and replaced.

I sure can relate to all your problems, but atleast I am able to take MTX and biologics. Sounds like best bet long term is to see allergist and look into detoxing, so that you can atleast take the big guns that will stop the progress of the disease. Good luck to you, I'm thinking of you and all you are enduring.xx

[lorann]

Please do let us know how things go...

[beauty96]

Thank you Lorann. I do allergy testing myself, am on a very awkward diet with no wheat, alcohol, sugar, dairy etc etc. I am just twisting, the spine, neck, hands, legs etc and I just need someone to look at them and tell me what is happening and future as well. I do have hospital shoes but cannot make any more cos of the way the feet and leg has twisted. It does affect my hips. I studied for a PhD in Immunology cos the NHS, in my opinion cannot really help me....so I have to help myself. But sometimes I could scream. can't you see me? to no avail. Was ill 50 years before finding out it was coeliac disease. 1944 to 1994. Now they still don't care...this is my opinion. It makes me quite depressed. I have had DLA for over 25 years at highest rate for mobility and care. The GP in Colchester back in 1986 said "well you have some money [invalidity benefit] what else do you want.

[Trulyfedup]

Oh honey...I can't add anything it's all been informatively given. I just wanted to send you my best wishes and hope you get help very, very soon...I don't know I.d cope without medication..maryx

[beauty96 in reply to Trulyfedup]

Thank you. I don't know sometimes. But at least they cannot muck up my immune system when it is not well anyway.

[francherry]

Hello, I don't know how I missed this originally - have you asked your GP to refer you to a rheumatologist? I'm shocked he said he can't send you anywhere. Can you see another doctor at your health centre to get referred? I know what you mean about drug sensitivity as I'm on my fourth RA drug and even this one gave me side-effects initially, but it is worth persevering to find one that you can take that will help slow down progression of the RA. Good luck and please do talk to another GP if your current one says he can't help - you deserve better.