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Newly diagnosed

PostPosted: Mon Jan 23, 2017 6:24 pm
by arttochoke
Hi there, I'm Fanny.
I'm newly diagnosed this autumn and have been struggling for some time now, around 7 years I'd say. I think it all started when I had swine flu in the outbreak during winter 2010. That's when I can say that I started to go downhill and have now finally been told by the MIN hospital in Bath that I have Fibromyalgia.
I manage to work full time, ride a motorbike and live on a narrowboat so I have quite an active life, but things are really getting me down about my symptoms and I wondered if anyone had any advice for the following issues. These are my worst..
- Shoulder and arm aches (most prevalent)
- Upper back ache (scoliosis diagnosed also)
- Neck ache (fused vertebrae)
- Jaw/teeth ache and shooting pain, right side mainly
- Widespread muscle pain after light exercise
- Bladder sensitivity, the urge to go when I don't need to, sometimes this is REALLY irritating
- Headaches/migraines that last for 3 days
- Problems thinking and finding words
- Digestive issues, constipation, indigestion, diarrhoea
I also get very bad period pains and hip/pelvic aches throughout the month. I wondered if anyone had any tips on managing the bladder sensitivity especially. I mainly keep the pain at bay by resting and taking ibuprofen, although that doesn't seem to do much these days. I have tried naproxen, that doesn't really help and I don't like taking the amitriptyline the doctor has given me as it makes me too groggy.
Am currently at work feeling like a bag of crap. It's days like today where I struggle to participate in the real world and would actually just like to hide in my boat and paint oil paintings.
Thanks for reading everyone, any advice would be most welcome.

Re: Newly diagnosed

PostPosted: Mon Jan 23, 2017 10:06 pm
by *Lisa*

I think the Amitriptyline also works on an overactive bladder as well as helping pain. Maybe your doctor can look into you seeing a Urologist if it persists and becomes a problem within your every day life. It is commen.

Alot of your symptoms are very commen and I would have thought having scoliosis would make symptoms worse as this in itself can cause stiffness and pain. I have a curve in my lower back, not scoliosis, its called loss of lumbar lordosis. My spine curves in making my butt stick out :oops: they also call it saddle back!... anyways this severly makes things worse for me and always straining my back muscles. On top of the fibro its a problem! adding to the stiffness and muscle spasms.

I would assume alot of your upper back problems contribute to your most main issues as upper back radiates around the shoulders, jaw & neck. I find hands on therapy beneficial although I know alot of people cannot tolerate this but worth a go as you never know.

Re: Newly diagnosed

PostPosted: Tue Jan 24, 2017 2:42 pm
by arttochoke
Hi Lisa, thanks for replying. Maybe I will give the amitriptyline more of a chance then. The doctor says take it at night to help me sleep. I think you are right about the back, my scoliosis is a curve to the right between my shoulder blades and stress worsens it. I find that Medipen takes the edge off the pain a bit so recommend that to anyone reading. I am currently being checked out for fibroids in my uterus as the doctor thinks my existing small fibroid may have grown. It's a process of elimination I feel! 7 years to be diagnosed is probably typical I guess. I will be happy to receive any recommendations for management of pain and aches and any treatments like massage etc that particularly help. I wonder if anyone has used acupuncture, apparently it helps my friend who has ME/CF.

Re: Newly diagnosed

PostPosted: Fri Jan 27, 2017 12:30 pm
by WakingNed
Hi 'arttochoke',

Congratulations on getting a diagnosis! I wish I could say the same for me. Can I ask who diagnosed you? Was it a rheumatology specialist, or a neurology specialist, or both, or a whole team? I'm having a tough time just getting someone to take me seriosuly. Maybe up here, in the north, hospitals have different priorities. I wish you the all best for the future - hope you enjoy some well-needed relief.


Re: Newly diagnosed

PostPosted: Tue Jan 31, 2017 7:32 pm
by LindyM66
Hi There

What about heat pads or packs? I find heat helps me tremedously.
You can buy a heat pad from boots which covers the whole of your back and neck.
Also, the self adhesive pads are great too. The heat lasts all day. Before I got my heat pad, I used the self adhesive ones - stuck one on each butt cheek. That pain I get there is horrendous and it spreads down my hamstrings. Hot water bottle is good too.
I've read up on the Medipen, and may give that a try.

Much Love
Lindy x

Re: Newly diagnosed

PostPosted: Wed Feb 01, 2017 12:53 pm
by Cat33
I have just finally been diagnosed but with regards to your bladder, i was diagnosed about 5 hears ago with a overactive bladder and i am on netitol and i call them my miracle tablet. They somehow interrupt the brain signal. After years of not having control of my bladder for example turning on tap would make me wet myself.... its just one a day and i do get a slight side affect which is a dry mouth but iv been told that means they are working. Try talking to your gp as im now told this is also linked with fibro.
Hope this helps