Fibromyalgia Action UK
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Worsening symptoms

Hi all, can I ask about symptoms as I'm worried about the progress of mine?

I have chronic pain and weakness in my right shoulder and arm, and have lost some control of my hand. The hand and wrist ache and I often drop things and holding a pen can be a nightmare. Fine movement is hit and miss as the control fluctuates. My back and hips hurt down the right side and this is all worse if I manage to sleep. It's progressed up my neck to the right side of my face which is numb sometimes, painful others.

My ankles ache and I have a large welt in my right heel, pressure area which has been treated by the chiropodist unsuccessfully.

I've urinary frequency and urgency, and can no longer digest meat as it causes great discomfort like irritable bowel. I no longer have a flat stomach which is not inline with my small size 10 frame. I've been tested for diabetes and I'm fine.

Fatigue and confusion rein which can make me irritable, especially as I work 12 hour shifts and documentation is a vital part of my work. Work itself is becoming a problem as I struggle with inflammation and getting joints to move.

I ask because I feel dismissed by the Rhumatologist who told me "it's JUST fibromyalgia, I'll set a prescription to your GP" she went on asking about social/ life problems, to which I told her I am very happy in my relationship and have wonderful children and grandchildren. I don't have money worries and I love my job, which I want to continue. I don't drink as it effects me quickly then I'm sick so I don't bother, and I eat a good balanced diet and I like a clean tidy house so I'm always on the go and love it. I'm no couch potato. She discharged me to my GP saying "ignore it and get on with life"

The problem is that the symptoms are making that difficult as I struggle to get on with the things I want to do, or pay for it the next day when The pain and stiffness increases!

Does this sound like others symptoms? I sometimes worry that the rude Rhumatologist just wanted me out of her office and was not listening. Symptoms have become chronic and I'm worried which joint will seize next.

Thanks for reading, Jan x

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Hi Jan. I'm sorry that you're going through so much pain just now. No rheumatologist should ever refer to fibro as just fibro! I really hope that you don't have fibro but if you do, unfortunately you will have to slow down in order to control your symptoms. This is advice coming from the pot! This is a great site to discuss your symptoms and get constructive support. I hope things improve for you. X

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Hi Jan1964 i am so sorry you are in so much pain often this is very difficult to deal with.

Well done for trying to keep going. Please be good to yourself take plenty of breaks.

Often life can be stressful so do get time out as you need it. Fibro is very painful and it often can affect a lot of areas in our life.

Please keep sharing so we can support you.

Good luck my friend

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Hi Jan

I am so sorry that you have got so much going on at the moment.

I am like you and have a list as long as my arm of symptoms that I suffer with Fibro. I have had Fibro & ME for 36 years and during that time I have come across many doctors that just dismiss Fibro.

Your Rheumatologist sounds appalling! Is it possible that you could see a Rheumatologist privately?

I rang my local hospital recently and enquired about a private consultation. It was going to cost about £300 but they said that they could offer me an appointment for the following day.

With regard to your urinary frequency and urgency please do go and see your GP and ask for a referral to see a Urologist.

I was just talking about this with a lady the other day on here.

I used to be the same as you and spent most of my life trying to find where the toilets were every time I went out somewhere.

I have had bladder problems for my whole life and have lost count of the urinary infections I have had.

When I was referred to see a Urologist I was incredibly lucky to see a Professor of Urology. He said that I could have further investigations (no thanks - had too many of those, including a Cystoscopy when I was in my 20's which went very badly wrong) or I could try a medication that he was trialling in women.

It is a drug that is only used for men but he told me that he had had quite a lot of success prescribing it for women. He asked if I wanted to try it.

Well, to say that it has changed my life is not an exaggeration. Instead of feeling as though I need to pee even after I have just been and getting up 5/6 times during the night, I no longer have that urgency feeling and now pee probably about twice a day.

I said the same thing to the lady I was talking to the other day. Your GP will not be able to prescribe this medication for you as it is a specialist drug.

However, if you were to see a Urologist you would be able to discuss it with them.

With regard to the pain have you been seen by a Pain Clinic at all? That is another avenue you could try.

I truly hope that some of this helps. Please feel free to come back to me if you want to ask me anything else.

Take care of yourself

Lu xx

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Hi Jan1964

I am so genuinely sorry to read this my friend, and I sincerely hope that you can find the answers that you are looking for? The symptoms that you have described could be Fibro but they could also be related to other medical conditions.

It may be worth talking to your own doctor again about what is happening for you? I have pasted you a link below to the NHS Choices cache on Peripheral neuropathy, which many of the members suffer with (including myself):

nhs.uk/Conditions/Periphera...

I would also say that back problems can also create this kind of pain and muscle weakness in the arms? So, it is really well worth getting checked out? I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken x

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Thank you to everyone, especially TheAurthor.

I received a new appointment with the orthopaedic surgeon and intend to give him a full picture of my symptoms. I have woken with a dropped face and dizziness today which is affecting my balance. I did overdo it yesterday as I had a day out with the kids and grandkids. Really lifted the spirits with lots of babies and toddler hugs for nanna.

I'm not looking for a miracle and don't think a diagnosis will make things better I'd just like to have chance to get the right treatment to enjoy my full life.

Thanks again and I'll post the verdict. If this is fibromyalgia, it's a sole destroying illness and my heart goes out to everyone suffering with it. Let's hope that medical research begins to understand the extent of the impact the symptoms have on people's lives. I'm considering writing a complaint about the rude dismissive way the Rhumatologist spoke to me, only to make her do some research to understand the reality of such a diagnosis.

Hugs to all x

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Good luck my friend.

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I saw the surgeon yesterday, he confirmed fibromyalgia and Osteoarthritis, and is sending me for another MRI as he's concerned about the swelling of my arm and hand and loss of sensation and movement in my fingers.He's also sending me to the pain clinic as he recognises that chronic pain is increasing my frustration. Again he asked about diabetes, my blood sugars are normal and I have a good vegetarian diet, I don't drink alcohol and I'm not overweight.

I'm to go back to him 4weeks after the MRI and am no closer to a nights sleep than before but hopefully somewhere in this I will get some pain respite!

I'm now considering claiming PIP and reducing my work hours. Never thought I'd say that, but if this is lifelong, I need to start taking more rest. Disappointed that they couldn't offer a solution and fix that problem so I could get back to my hectic schedule which I really enjoy despite the exhaustion!

My empathy is with all FM suffers. Hope you all have a good day.

Thanks for the support and advice. X

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