New to group

[Maria31]

Hi all, glad to have found this group! I’ve just been diagnosed with osteoarthritis and fibro, after misdiagnosis of bilateral carpal tunnel. My hands, fingers and wrists are really sore and I have awful burning up my arms. 200mg pregabalin a day is helping a bit, rheum mentioned switching to amitriptalin (sp?). Also HRT as I seem to have crashed into menopause at age 48. Also have sciatica due to bad disc degeneration and hip bursitis which means I can’t always walk far or sit down for long! Am currently signed off work and v concerned about returning as I’m a copy editor. Yet to talk to occupational health about diagnosis. Has anyone got any advice? At the mo I don’t feel able to really work at all! Am struggling with daily tasks. Will the fibro pain subside, stay same or get worse?? What should I expect? Feel clueless. Thanks in advance!

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org and read our patient information booklets at fmauk.org/publications

[Dinkie]

Hi Maria and welcome to the club nobody particularly wants to join. It can be a bit of a shock when first diagnosed but remember you are the same person you were half an hour before the label was pinned to your chest.

As fibro is different for all of us it's a case of trial and error to see what works for you.

Some of us cannot take prescription meds and rely on alternative ways of managing pain. I too have osteoarthritis and fibro and a few other problems. I do not take any meds but rely on processed food and refined sugar free diet, tens machine, epsom salt baths (this helps with muscle pain), biofreeze gel, chiropractor and hypnotherapy sessions. I also use weighted blanket to help me sleep.

I manage to work still and having been through the occupational health assessment and survived it I can honestly say it was very helpful. I didn't want to have it but my employer insisted and now I have a car parking space just outside the door, various handrails and ramps, modified uniform, more breaks if I wish (I find I don't take breaks as I would seize up and it would be worse for me). I have a special chair and my hours have been modified as I cannot drive in the dark so I do longer hours in summer than winter.

One of the best things you can do to help yourself is master the art of pacing. Far easier said than done. We are all guilty of overdoing things on the better days, trying to rush around like a mad thing doing all those outstanding jobs, then we crash and burn. I now limit myself on better days to one outstanding chore with plenty of breaks. It's still work in progress even after years.

You may find a referral to the pain clinic helpful or one of the fibro clinics dotted around the country. I went to Guys & St Thomas's and saw a pyschologist, physio and rheumatologist and together they put forward a plan and sent it to my GP. Its a one time appointment only but well worth it if you can persuade your GP to do a referral.

We are a pretty friendly bunch on here, and discussion is not always fibro related we share photos and there's a strong knitting group and a few jokers (myself and mattoid-mags included in the last group!).

Any questions, please ask, nothing too silly because you can always rest assured someone else has asked it or thought it before.

Dinks

[Maria31 in reply to Dinkie]

Hi Dinkie, thanks for such a considered reply. I’ve already put biofreeze gel on the shopping list! I do feel quite overwhelmed so all v helpful. Glad to hear you are still working. Pacing myself is a current challenge… will keep everything you’ve said in mind.

[thespianglobe in reply to Dinkie]

How on earth do you access GP's, hospitals and physio? I am sure I have fibro, I have had all the symptoms and then some and also terrible gastric problems which have been getting worse over the last seven years, I also have very vivid dreams most nights which seem to intensify the pain. I last managed to see a GP over a year ago and had one telephone appointment which I took whilst sitting in a supermarket car park! My GP surgery is hopeless and is mainly staffed by semi-retired locums, the last one I spoke to denied that fibro existed and said it was just a list of symptoms. I was referred for an abdominal scan nine months ago but no appointment as yet and I am losing weight as it is easier not to eat much as it leaves me in pain. It seems to be better if I avoid sugar but I would welcome diet tips. I look OK and I don't want to keep moaning at home but it is all getting too much, my husband is 80 and has no interest at all so I am trying to cope with a big house and huge garden by myself. Totally fed up - help. 😪

[Dinkie in reply to thespianglobe]

Hate to say it but it took 20+ years to get a diagnosis. I learned the hard way. If you wish to be listened to then the only way is to put your request in writing (it then forms part of your medical notes) GPs often do not record everything on your record. You then follow it up with a telephone consult. Took me two years to get the referral to Guys and St Thomas's and it is only a single appointment and they will not see anyone who has not got a formal fibro diagnosis. For you I would suggest you ask for a referral to a rheumatologist as they are normally the right consultants to give a diagnosis - dont't expect it to be quick though. You could also try neurologist as they sometimes see fibro patients too, depends on your symptoms which one to see. Good luck

[thespianglobe in reply to Dinkie]

Thanks for the information.

[MaggieSylvie in reply to thespianglobe]

Hi thespianglobe, I also live with a man who won't lift a finger in the house, even when I am badly injured.

Because of my compression fractures (I also have osteoarthritis and fibromyalgia) I was granted Attendance Allowance, which enables me to pay for a Home Help once a week. I could afford to have her more often but I have to do some things myself, otherwise I would end up "glued to my chair". You could get a gardener as well with the amount they pay. When you fill in the form you have to stress the help you need to be able to live normally and it needs to be on a bad day, and list all the medications you take. It might feel like over-egging the pain, but that's the way the benefits system works. It might help if you could also get a diagnosis or two. I suggest you start with your GP with the aim of getting a referral.

[Maria31]

After numerous GP appts I was referred to both orthopedics and rheum, but I decided to go private as the waits at the mo are so bad. Although I did see a hand and wrist specialist on NHS who dismissed the carpal tunnel and said it could be fibro. It has cost me a lot but I couldn’t see any alternative as my symptoms severe and sudden. I realise this isn’t an option for everyone but reasoned that getting an expert opinion is worth more than spending money on stuff which may not get you anywhere in the long run. For example physio appts that don’t work because you don’t have the right diagnosis!