Hello 👋🏼: Over two years ago now I... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hello 👋🏼

Blue_Clay profile image
11 Replies

Over two years ago now I started with pain in my neck and shoulders, with tingling and numbness in my hands/fingers. I went to my GP, who referred me for an MRI scan. Turned out I had cervical and lumbar spondylosis (the lumbar spondylosis I’ve suffered from since childhood). I was then referred to a neurosurgeon, who performed more tests, X-rays etc. I had to stop working in April 2021 due to the pain, and eventually had to stop driving as well. This September (after waiting over two years!) I finally had a corpectomy (removal of the vertebra in my neck) with cervical fusion. Painful 😵‍💫

During this time, and long before, I have suffered from extreme tiredness and fatigue. My sleep is never restful, and despite how much I have, I’m always still tired when I wake. I have also suffered with depression and anxiety for years, and frequently experience muscle pain/aching all over my body, but particularly my lower back, neck and shoulders. It’s usually at its worst first thing in a morning, and when the weather is cold. I have constant problems with my temperature (which causes awful hot and cold sweats) that can be extremely embarrassing. I frequently have bouts of dizziness and over the past 12 months have found concentration and applying myself to anything so difficult. It feels like I have cotton wool for a brain 🫤

There are lots of other symptoms (restless legs, painful periods, always feeling down/anxious which leads to never leaving the house) that I never considered could have been linked. But I truly believe after all my research that I may have Fibromyalgia?

I’ve joined this forum to see if anyone can relate to my situation? I have had lots of tests to check for perimenopause, thyroid problems, rheumatoid arthritis, osteoarthritis, anaemia, liver function, vitamin deficiencies etc etc, and the tests always come back fine.

I just feel very alone at the moment (although I’d like to add that I have an extremely supportive partner) and fear people judge me as lazy when I go through bouts of extreme fatigue and pain in my body, which then renders me bedridden at times.

I have a doctors appointment on Monday, but feel very anxious of mentioning fibromyalgia for fear of not being taken seriously 😕

Apologies for the long introduction to my situation. I’m just looking for some advice and to see if anyone else feels the same? You end up feeling you’re the only one, which always leads me to question myself 🙁

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Blue_Clay profile image
Blue_Clay
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11 Replies
Welshcatlady profile image
Welshcatlady

Hi and welcome to our group. I think you should mention Fibromyalgia to your GP, I would tell him your symptoms and then just ask him could it be Fibro. Some of your symptoms could be caused by other conditions. You mention painful periods, could you have Endometriosis? I know I suffered from when my periods started until I was in my late 30s, painful and heavy periods. I had a Hysterectomy and it was discovered that I had Endo, this was over 30 years ago when Endo wasn't even considered as the root of my problems, I do believe that there is more known about the condition today. Hope you get some answers and help from your GP.

Blue_Clay profile image
Blue_Clay in reply to Welshcatlady

You’ve all been very kind, thank you.

Unfortunately I had to postpone my trip to the doctors as I’m now in bed with a pretty rubbish dose of Covid 🙄🤧 I feel like I can’t win at the moment 🤦🏼‍♀️

I’m so relieved to have stumbled across this forum however. It’s so comforting knowing there are other people out there suffering similar to me, that I can talk to and relate to.

I’m super grateful 🫶🏼

Welshcatlady profile image
Welshcatlady in reply to Blue_Clay

Oh I am sorry that you have Covid at the moment. Hope you get over it soon. 🤞

1whitestar profile image
1whitestar

These symptoms are like mine I'm even bed ridden with fibromyalgia I went to a rumerthogly and they diagnosed it.

Blue_Clay profile image
Blue_Clay in reply to 1whitestar

You’ve all been very kind, thank you.

Unfortunately I had to postpone my trip to the doctors as I’m now in bed with a pretty rubbish dose of Covid 🙄🤧 I feel like I can’t win at the moment 🤦🏼‍♀️

I’m so relieved to have stumbled across this forum however. It’s so comforting knowing there are other people out there suffering similar to me, that I can talk to and relate to.

I’m super grateful 🫶🏼

Jep144 profile image
Jep144

Hello and welcome to the forum. I would definitely ask the Doctor if fibromyalgia could be a reason for your symptoms. I had to push and push my GP for a diagnosis after all the tests I had came back ok. I now see another GP in the same practice who is well versed in fibromyalgia and it’s signs and symptoms.

Blue_Clay profile image
Blue_Clay in reply to Jep144

You’ve all been very kind, thank you.

Unfortunately I had to postpone my trip to the doctors as I’m now in bed with a pretty rubbish dose of Covid 🙄🤧 I feel like I can’t win at the moment 🤦🏼‍♀️

I’m so relieved to have stumbled across this forum however. It’s so comforting knowing there are other people out there suffering similar to me, that I can talk to and relate to.

I’m super grateful 🫶🏼

Uellow22 profile image
Uellow22

Good morning,

I am sad to hear of your suffering and feelings of being alone with your symptoms but totally relate to you, it could have been me writing your message, only I have not had my spine fused you poor thing.

I was diagnosed last December with Fibromyalgia and it's taking me heaps of energy and mental stamina to make sense if it.

It certainly sounds to me like you may have fibromyalgia and I would mention it to you GP but the anxiety prior to these appointments is horrible 😔, I understand.

My husband is also very supportive but sadly he has a disability so when we both have flare ups at the same time it's very painful emotionally as it's tough to have the empathy for one another.

Please don't feel alone (ha ha, I say that but I do often) this forum is a great place to share with people who care.

Good luck at the Doc's, deep breath and you will be fine, you may doubt what you have as such, but we can't doubt the pain eh + cotten wool head.

Healing HUGS 🙂

Yellow 💛 22

Blue_Clay profile image
Blue_Clay in reply to Uellow22

You’ve all been very kind, thank you.

Unfortunately I had to postpone my trip to the doctors as I’m now in bed with a pretty rubbish dose of Covid 🙄🤧 I feel like I can’t win at the moment 🤦🏼‍♀️

I’m so relieved to have stumbled across this forum however. It’s so comforting knowing there are other people out there suffering similar to me, that I can talk to and relate to.

I’m super grateful 🫶🏼

Yassytina profile image
YassytinaFMA UK Volunteer

Hello , I have just read your post and I can totally relate and understand how it can be on a daily basis. Glad too read your partner is supportive, I keep a small circle of friends and I never worry now that people would think I am lazy as we can only take each day as it arrives. I am lucky people have took on board my conditions, I have CFS as well and some days it’s hard too get going, the last few days has turned cooler with heavy rain so it differently seems too affect my aches/pains. Don’t ever question yourself ,we really didn’t ask too join this very big unwanted club for sure. I hope the doctor shows empathy and understanding. I take Duloxtene for anxiety and has worked very well , I do get moments still of feeling down and I try and talk myself into thinking about the positives. Welcome too the forum you will find it helpful especially if you are diagnosed , take care xx

hello,

i have the same in my neck and shoulders, but its a bearable pain, its not like i get in my joints, the pain in my neck and shoulders if i attempt any sort of task even getting dry after a shower i become out of breath, my voice changes, i get dark under the skin rashes on each side of my neck/throat, and theyve said its fibro, but doesnt feel like it, they say fibros not progressive, ive had fibro a long time, but this as got worse over the last 3 years, its every day now, doesnt come and go just stays with me 24/7 now.. once diagnosed fibro, everything is classed as fibro, so i can understand you not wanting to tell the docs, i hope you get the right answers.

best of luck

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