Diagnosis

[LSHARPER]

Hi everyone hope your all as okay as you can be I was diagnosed with fibromyalgia over a year ago but think I’ve had it for nearly 10 years. Recently my symptoms have be very bad and debilitating! I have had bloods and more scans and they now suspect I might also have ankolosis spondylitis I’m waiting to be seen by the hospital. Just wondering if anyone else has this or both or can give me any encouraging advice thank you in advance. reading all your posts help me loads! People who don’t have this cannot possibly begin to understand the struggle stay safe xxx

[Dizzytwo Moderator]

Hi there LSHARPER, let me wish you a very warm welcome to our group

I myself have fibro for 35yrs and severe OA so can empathise with you. It does sound like you may be going through some kind of flare up do you think? May I ask if you are taking any kind of pain medication? It may need tweeking or changing if you've been on medication for a long time it does tend to lose the ability to do the job it was first prescribed for.

Please don't suffer in pain. I know times are difficult for everyone right now but if you need to please ask to speak with your GP. Also the colder weather always make my pain issues worse for many obvious reason less movement for one.

I see you've left your post unlocked to this community only for privacy reasons you may want to lock it. If you do this link will show you how

healthunlocked.com/fibromya...

Momo

[LSHARPER in reply to Dizzytwo]

Thankyou Dizzytwo wow 35 years that’s a long time to be in so much pain you should be given a medal! Hope your having a good day today no I’m not on any medication! I’m a Carer and have a 4 year old so any pain meds I’ve tried just make me fall to sleep as if the fatigue isn’t bad enough! What has worked for you? If you don’t mind me asking because I’m waiting to see the doctor they have just offered me anti depressants which I felt was a slap in the face I’m not depressed I’m in pain a lot of pain yeah I thought it was a flare up however I feel it in my bones in my spin which makes me think it’s also something else. I don’t know it’s just so hard with no end in sight and no Miracle drug lol it’s good to speak to people on here who understand and are going through the same thing though makes you feel like your not alone so thank you

[Dizzytwo Moderator in reply to LSHARPER]

Aww bless your very welcome. First I am in pain. I am only saying this because I am unable to take strong pain meds myself and people don't think I can be that bad lol

Please don't think been offered antidepressants are a slap in the face they definitely are not. The low dosage your given to try and help with pain is no where near the dosage given to treat depression. They help some and do not help others. It really is a case of trial and error I'm afraid. I couldn't take them myself but they may help you.

All I can use with out bad side effects and what helps me bite the bullet is OTC liquid caps nurofen and a small dose of valium for my spinal pain.

My life saver over the years and raising 2 kids and holding down a job was my good old fashion hot watter bottle. I also keep ice gel packs in the freezer. Sometimes cold works better than heat. I also find my tens machine helpful.

Like I said everyone is different every day can be different to how we feel. I take one day at a time and deal with each symptom when it turns up to the party lol 🤗🤗

Momo

[Midori in reply to Dizzytwo]

I agree with Momo; It may well be the change in the weather starting a flare up for you.

I watch the weather forecasts religiously, and its the first thing I go to on my Smartphone every morning, I can then plan my day with some confidence. If I get cold and wet, I'm done for the day!

I was diagnosed in 2007, although it started long before then. Abusive marriage left me with PTSD, and a suicide survivor in 1991, Started feeling stiff, and then in 1996 I had gall bladder surgery, followed by Shingles, which kicked the Fibro into high gear. Took another 11 years to get the diagnosis.

I find my internal thermostat does not work, and that nowadays I am only comfortable in a very narrow temperature band. Too hot and I melt; too cold and I freeze like an ice statue! No Mediterranean holidays for me!

I am lucky that I have learned to separate what is real pain from that which is my body giving me false alarms, and I am also lucky that I can cope with fairly minimal medication, I have taken an attitude with my Fibro, that if it doesn't give me too much grief, I won't get heavy with the medication.

I find that what works for me best is to do a little, rest a little, and repeat. If I do too much I have grief, If I rest too long, I set like concrete!

I hope this may be of some help to you,

Cheers Midori

[Dizzytwo Moderator in reply to Midori]

I like that "if it doesn't give me too much grief I won't get heavy with the medication" Couldn't have put it better 👍

[Hidden]

Hi LSHARPER,

I have Ankylosing Spondylitis is that the same I was told that this disease can be linked to a certain gene HLA-B27 which can be inherited, my dad had this.

There is lots of useful information out there but unfortunately mine gets worse with exercise that’s if what you have is the same and I have limited chest expansion so the struggle is real and I have a lot of empathy with you it’s debilitating.

There is a helluva lot of reading material out there there is just too much to list here.

Panda

🐼🥰💜😟

[LSHARPER in reply to Hidden]

Thank you yes it is my spelling 🙈 oh no really I’m sorry hope you have a better day today I’m waiting on another scan for it to be confirmed but the rheumatologist is refusing to see me again! He says he doesn’t think it’s that and there’s nothing more he can do for me they think it’s just the fibromyalgia even though I tested positive for the gene and have all the symptoms makes me very angry when there dismissive but I’m going to keep on at them and in the mean time I will get reading lol thankyou x