Frustrated, fed up and near to tears

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Frustrated, fed up and near to tears

Postby nik404 » Tue Sep 09, 2014 10:09 pm

I was diagnosed with Rheumatoid Arthritis when I was in my early twenties - I'm fifty now. I trotted to clinic for 20 + years and made little progress - in fact my leg became so twisted through my consultant's inability to act that I now have to wear a caliper. Eventually I gave up on the clinic but last year was persuaded to make a return 'Because medical advances have been made and treatments are more effective'.

I'd been in the 'insulting' room for two minutes when this new consultant announces that it isn't RA I have but fibromyalgia, a condition I'd never heard of before, and he expected me to simply go 'oh, right' and trot on as ifthe previous 20 odd years had never happened. He got quite aggressive with me which made it worse. I was most unhappy. I saw him again today and things were not a lot better. I came out in tears. He's yet again done nothing to help, I'm struggling with no pain relief, can't sleep and I'm struggling to continue with my job.

Why is there no practical help anywhere? I hate being fobbed off but I just don't seem to be able to get across to these people the difficulites I'm having.

Any words of wisdom for me?
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Re: Frustrated, fed up and near to tears

Postby Tally1068 » Tue Sep 09, 2014 10:24 pm

None, but tons of empathy.
What is wrong with many of the medical profession these days? I cant tell you how many times I've come out of Rheumatology in tears, especially after being told by some kid who are in their first consulting position and have sod all knowledge about how much the medical advances have come on since I was first diagnosed with chronic asthma. Good grief there were no nebulisers or steroid inhalers, they hadn't been invented.

:twisted: I wrote a letter of complaint after one delightful doctor, who stood at the bottom of my bed (I had a broken back, couldn't move and was in horrendous pain) asked me why I was such a junkie. It took another 2 months for anyone to even exam my back, let alone get an X Ray and Scan.

Hang in there. I completely understand why you are feeling like you are. If you feel strong enough, complain and ask never to see the jerk again.

Sending you loads of hugs and positive vibes. xx

I'm not even going to suggest things will get better, but I so hope they will. :pull-hair: :shooting: :goodluck2:
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Re: Frustrated, fed up and near to tears

Postby denys » Tue Sep 09, 2014 10:27 pm

But fibro doesnt cause deformity so if your leg has twisted then surely its more likely to be RA isnt it :?: :?: :?: :?: :?:

Some consultants dont seem to have developed a bed side manner at all and can leave you with a lot more questions than answers, if I were you I would make an appointment to see your GP and ask about any reports that have been sent back about the appointment and if they are standing by the diagnosis then ask for some pain relief.

It can take some time to get something that will help and so maybe a referral to a pain clinic might help :?: :?: :?: :?:

Anyway I'm hoping you get some help quickly so that you can feel a little bit of relief :hugs: :hugs: :hugs:
Denys

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Re: Frustrated, fed up and near to tears

Postby Theresa34 » Wed Sep 10, 2014 9:16 am

Not all rheumatologists are mean. Mine is fantastic. He truly cares and is doing all he can to help me. I also have the support of a specialist nurse who I see inbetween his appointments. There's also an advice line I can ring at any time. Please dont give up finding someone who cares x With regards to RA, how was that diagnosed? Any bloods, xrays...
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Frustrated, fed up and near to tears

Postby nik404 » Thu Sep 11, 2014 9:52 pm

Thank you for your support. It's so maddening!

The twisted leg, I discovered a few months ago, was down to osteo arthritis. I had an MRI scan some years ago but despite asking, no one bothered to tell me what had caused it.

I'd been saying to my original rheumatologist over a period of several years that it was going wonky but of course, he knew best and did nothing until it was far too late. When I asked my GP for another referral and he sent me to the orthopods who ultimately sent me for the MRI and insisted that I had to wear a calliper, the original rheumatologist 'suddenly' decided that he didn't need to see me any more after 20+ years. Every few months I had blood tests and never any doubt that it was RA I had until this year.

I don't really care what the condition is called, it isn't a pet, but I would have been glad of some help - at least some half decent pain relief would be good. All they seem interested in is that I should get enough sleep - nigh on impossible when you can feel every bone. Really maddening
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Re: Frustrated, fed up and near to tears

Postby denys » Fri Sep 12, 2014 3:45 pm

Exactly, you can have both conditions running side by side and I would have thought any decent doc/consultant would have considered that. You are right the name is not important its the effect it has on you that needs treating.

Can you ask for a referral to a different rheumy or do you think your doc would help with something for you :?: :?: :?: maybe being referred to a pain clinic might help and one of the talking therapies might give you some extra tools to help you deal with everything :?: :?: :?:

Anyway I wish you good luck and hope you get the practical help you so desperately need
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Re: Frustrated, fed up and near to tears

Postby philippa13 » Fri Sep 12, 2014 9:34 pm

Hi my gp experience has been hit and miss I'm afraid.
One gp saw my meds list and went into a flap telling me I didn't need them cause my pain is in my head !!. Cause he gets a stiff neck and all he has to do is stretch it out if I even took 25mg of lyrica I'd be on my back he said. (At this stage I thought what a plonker). Then he proceeded to tell me I was a junkie and put me on weekly collections from my chemist just to humiliate me.
The next DR I saw wants me treated by cbt and counciling I can't remember what she said but it was very obvious the 'gps' had been talking. All I want is a referral to rheumatology I can't understand why they won't . I told her I've done some and reading on Internet about different non medical treatment. I have also had several trips to a physiotherapy dept I had physio, hydrotherapy., acupuncture , a tens machine and several pain injections I'm open to more suggestions. Shake me and I rattle. I'm just about ready to do a Thelma and Louise.
So list of illnesses.
1 . Fibromyalgia
2. chronic back pain/ hip pain ./ knee pain/ feet pain.
3. asthma.
4. Depression.
5. Tendinitis both feet. / Tendinitis R elbow.
6. Severe wrist and hand pain .
7. Plantular faciiitis both feet .
8. Arthritis both shoulders.
9. hidredentis supper is. (Boils and abscesses).
Now medicine.

1. Cocodomal - 30 x 500. 2x4 td.
2. Robaxin 750 2x 4td.
3. Lyrica 200 my 1x3 td.
4. Naproxin 500 mg 1x2 td.
5. Amitriptyline 10mg 2 once daily.
6.feldine gel.
7. Omeprazole 20mg 1 a day .
8 . Hrt 1 a day.
9. Ventolin .
10 . Seratide.
11. Calcium and vitamin D.
12. Vitamins.
I want to be on as little tablets as possible I know that is probably a long way off . I'm fed up buying these amazing products that promise the earth moon and stars cost a fortune and never deliver . Oh and I lost my dla appeal as the gp never wrote half of my problems on her part of the form so I waited a year find out the gps ' f'd' it up and lost me a potential 3500 pounds great isn't it . We're are you meant to go now what do I do this is a bloody mess.this illnesses strips your life your dignity and any hope of living .
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Re: Frustrated, fed up and near to tears

Postby nik404 » Tue Sep 16, 2014 9:39 pm

It sounds as though you are having a similar experience to me Philippa13. My gp is ok but doles out medications like they are coming out of his own pocket. I haven't had decent pain meds since they took Co Proxamol off the prescription availability list and I don't find cocodamol any sort of substitute. They might be 'broadly' the same but my carcase says otherwise.

Over the years I've tried to keep positive, even when lumbered with a calliper, but I'm finding it almost impossible at the moment. It's a struggle.

The rheumatologist did suggest something about going to the pain clinic but I'm dubious about committing to another clinic where I'm going to be patronised and my views ignored.
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Re: Frustrated, fed up and near to tears

Postby lemurin » Tue Nov 11, 2014 10:30 am

nik404 wrote:It sounds as though you are having a similar experience to me Philippa13. My gp is ok but doles out medications like they are coming out of his own pocket. I haven't had decent pain meds since they took Co Proxamol off the prescription availability list and I don't find cocodamol any sort of substitute. They might be 'broadly' the same but my carcase says otherwise.

Over the years I've tried to keep positive, even when lumbered with a calliper, but I'm finding it almost impossible at the moment. It's a struggle.

The rheumatologist did suggest something about going to the pain clinic but I'm dubious about committing to another clinic where I'm going to be patronised and my views ignored.



Sorry for the late entry, but I just wanted to say about the pain clinic I went too.
The appointment I had was really good, I came out crying but not because I was sad, because I was so relieved. It was amazing to finally hear someone who knew what I was going through. My doctor specialised in FMS and he said some symptoms I didn't mention (I had been told they weren't to do with FMS and just part of me...) and it was just so good to hear that it wasn't just me making it up. He recommended a couple of things to try and let me choose what I wanted to do. I opted for a ketamin infusion (i have made a thread about it if you'd like to read up on it) and in the mean time I recieved a letter from him to my GP (he had copied me in) confirming my condition and that he thought I was a very pleasant lady who he was happy to help!
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