My story

[Northernnugget]

So, late 2019 I had the pleasure of a frozen shoulder I didn't take time off work and carried on I was under physio but by March 2020 I had pain in my right wrist that kept coming and going Lock down then meant the physio was put on hold I woke up one night with numbness in both my hands and had blood tests that proved negative for inflammation Eventually the physio was reinstated and I was referred to a consultant as there seemed no improvement to my shoulder I explained to him I was also worried about the pain in my right wrist He booked appointments for both a nerve conductive test and ultra sound Carpal tunnel and inflammation was ruled out and he then referred me in October 2020 to Rheumatology After 5 months of waiting and hearing nothing with the pain in my wrist getting worse and experiencing a similar pain in my other wrist I rang Rheumatology to be told I could be waiting a year due to covid The frozen shoulder had dissipated but I was experiencing stiffness in the morning that was had to shake off I paid for a private twenty minute consultation with a Rheumatologist who then referred me back to the NHS for diagnostic investigation I had two further ultrasounds, an Xray and finally an MRI of my spine and pelvis, all showing nothing of why I have this continuing pain in my wrists I've rang Rheumatology several times in the past year asking for help but they just kept reiterating there was nothing showing Eventually my GP prescribed Gabapentin I have been taking it for the last two months and recently upped the dosage to tree times daily I feel it is doing nothing I was finally seen at the Rheumatology clinic last week and after a brief look through my notes the clinician has diagnosed me with Fibromyalgia The pain in my wrists feels like bone grating against bone along my along the wrist joint and that my tendons are being stretched to the point of snapping Its worse in my dominant hand I also have a ganglion cyst at the base of my thumb and the joint seems to be protruding My shoulder blades feel like there's fire beneath them My knees and hips ache and I'm as miserable as sin

Thanks for listening x

[worried4me5]

So sorry to hear that Northernugget. Fibromyalgia is a conundrum in some ways, and extremely frustrating to deal with. One minute, it's just one part of the body that hurts, the next it's one side of the body then it's all over. So many things hurt and you're left wondering what's next!

I was diagnosed in 2017 but had been in pain for years before then. It's learning to live within new limitations but not letting it beat you or get you down too much. You can initially feel so bad about it and not being on the right medication doesn't help. You'll need to try other medications after you've given the one you're on enough time to see if it works (6-8 weeks perhaps) before asking you GP for a different one.

In the meantime, try not to overdo things, find your limitations and work within them. Rest when you need to and do things in smaller steps than you used to before. Try to keep moving though, even if it's just from one room to another initially. Otherwise, you'll feel stiff and then, more pain.

Some people change their diet and adjust their lifestyle. Anything is worth a try.

Good Luck x

[Northernnugget in reply to worried4me5]

Many thanks for your response I'm trying to stay positive The Rheumatologist has discharged me in to the care of my gp and said that he would be sending me information about my condition but as yet I've received nothing though I can glean most information from Dr Google x

[Greenpeace in reply to Northernnugget]

Hi there, so sorry to hear that you’ve been diagnosed with Fibromyalgia.

It’s always difficult at first trying to adjust your life around pain, and since Fibromyalgia can affect people in different ways, and Medication can work for some, but not for others makes it more difficult.

You’ve been given good advice in the above answers, and you’ll soon find out what works for you.

Have a look at our website fmauk/org there is lots of info on there, and also the NHS website.

There is life after a Fibro diagnosis, but you have to work out what suits you whilst living with a Chronic Illness.

Good luck.

GP.😊😊

[Northernnugget in reply to Greenpeace]

Many Thanks x

[Madred14]

Hi your journey seems very similar to mine,I was diagnosed in 2016 following test after test. I was lucky enough to be referred to a fantastic physio who was also a mindfulness teacher. He didn't just give me a few exercises to do at home, he tried acupuncture, neck and shoulder massage and a tens machine all so I could see if any of them helped and the massage was most effective. He gave me some tips and recommended the CALM app, I still use it the app today it helps with relaxation and there are some great sleep stories on there which i often turn to in the middle of the night. I also found a fantastic massage therapist who i see weekly and always feel so much better after, she has been away for 6 weeks and i was really struggling by the time she came back.

A different physio suggested putting my hands in cold water for a couple of minutes in the morning to help reduce swelling that would build up overnight, i found putting my hands in a thermal wine bottle cooler really helpful, also compression gloves which physio recommended.

Have you been reffered to your local pain management clinic ( your gp can do this for you) I attended a weekly meeting for 6 months and now have a monthly webinar) it could really help being able to speak to people about how you feel,its not always easy talking to those close to and although they try to empathise they cant as they don’t know how it feels to be in pain day in day out.

Someone on the pain management group had problems with her hands too and she used a wax bath which she said gave her som relief, i haven't tried it myself though.

I hope you find something that at least some relief very soon.

[Northernnugget in reply to Madred14]

Earlier this year I went back to physio to ask for second opinion regarding having the Carpal Tunnel test as I found the pain in my wrists seems to be classic Carpal Tunnel I was met with an oh my god how dare you question the consultant attitude even though the there was no record of the consultants actual notes She went off to have a word with him and the consensus was to refer me to Orthopedics I have an appointment in two weeks and it seems the consultant there is a specialist in condtions like Carpal Tunnel I have not had any diagnotic imaging since October 21 so Im hoping he'll go down this route In the mean time I'll contact my GP and find out about any help I can recieve

Thank you so much for the tips xx

[Sandybbfan]

Hi and Snap! I’ve had the pretend frozen shoulder, awful pain with sore wrists and fingers. My doc was going to get me injections as we were both convinced I had something serious going on, the shoulder pain/stiffness lasted a week and then like magic it went away, the hands and wrists however are almost constant. That’s Fibro, random pain which is very real but unexplained. Painkillers can help but more often than not they barely do anything. All I can say is try different ones till you find one that gives some relief, I’ve found that none really take all the pain away . If you come off gabapentin wean yourself off slowly with the docs help so you don’t get any side effects x best of luck x

[Northernnugget in reply to Sandybbfan]

Thank you x

[Hardyboy196457]

Hi I see or stories are very similar & also different! I was on gabapentin for trigeminal neuralgia nerve damage fibromyalgia etc etc the dose kept being increased I’ve come off of it as I felt I’m no different with it & I now have been struggling with ibs & diverticulitis it’s more I think finding what works for you how about swimming ( even if your not a swimmer try just stretching & moving in the water ) meditation don’t let your body seize up good luck x

[Northernnugget in reply to Hardyboy196457]

Thanks xx

[Northernnugget]

I've just rang my GP and he's upped the Gabapentin to 300mg Rheumatology have not been in touch with my practice to inform then of my diagnosis Typical x