Fibromyalgia - the agony of muscle spasms!

[IHearTheMermaidsSinging]

I've had fibro for over 20 years and managed to remain fairly active, running my own business , and managing the condition pretty well.

In the past couple of years I've slowed down a bit and have developed severe muscle spasms around my ribs/stomach and into the upper back/shoulder blades area, to the point that when they kick off, I daren't move, something simple like getting dressed is tortuous, I have to lie down for hours thus missing days of my life just resting as it can take anywhere between 3 days to 3 weeks just recovering from an attack. The medication I'm now taking helps enormously but makes me dizzy, light- headed and extremely sleepy.

If you have fibro - or any similar condition, do you experience these muscle spasms too? If so, how do you deal with them? I'm asking as I feel so lost with this, not knowing anyone else to chat about it with.

Hi , fellow long term sufferer here who also has these issues. I’m lucky that I’ve had access to a great private physio who is also a qualified nutritionist over the years to help

Are you taking any supplements? I’m assuming you’re more mature and you may have some drop in hormones by now but nutritional deficiencies can be involved especially Magnesium which can cause spasms. I’m a coeliac so I take it orally but my physio also recommends the spray and bath salts

Ive also found that whenever my B vitamin levels drop pain etc is more obvious so I take a high quality Bio available B group supplement (Jarrow B right) lastly wen it comes to sleep I’ve also been using a good quality CBD spray and this has been a game changer for me

@Tomnooktoldmeto Good to hear from you.
Yes, I take supplements - Calcium, magnesium and zic plus Vit'C. I also see a fantastic Osteopath, and take HRT.
What I don't understand is that ever since I developed Fibro I've had muscle spasms in my feet/legs/jaw/ etc, but have always been able to manage them through massage/heat etc, but this with my ribs and stomach has me flummoxed. When it kicks off It's like a tight band around my body. I can't breath properly, can't bear anything tight such as a waistband, and can't sit at a table/lean forward to work.

Your comment re the cbd oil is interesting, how has it changed things for you? I've held off trying it out so far but would be willing to give it a go.

Do you think you might have EDS? It’s my understanding that fibro and EDS go hand in hand. I get muscle spasms really badly at times and I’ve always put it down to my EDS not the fibro and my osteopath agrees. The hypermobility can cause the muscle spasms.

@VisaWoes I have benign hyper mobile joint disease as part of my profile but the spasms are not related to this in my case, I’ve found it’s definitely worse since entering late peri menopause

@IHearTheMermaidsSinging the CBD spray has definitely improved things, it has a relaxing effect. I forgot to mention that I also use a stretching strap to loosen all my lower back/ pelvic/ upper leg muscles and this has also had a major effect in reducing back spasms

@Tomnooktoldmeto I'm sorry to hear you have EDS. I've just looked it up and it sounds a very difficult - and painful - condition to manage.

Do I think I have it? No, I don't believe I have. My joints are the opposite of stretchy, I don't have stretchy skin or any of the other symptoms mentioned, though I do bruise extremely easily.

Can I ask how you deal with your muscle spasms? I use warmed wheat bags, resting in bed, massage, and medication, but I suppose I'm hoping that someone here has a miracle method of curing them.......If only!

@IHearTheMermaidsSinging the physio I see specialises in Fibro and often bounces ideas off me because I am an ex nurse with a pain back ground

a large Percentage of her patients have a profile with hyper mobility vit D vit B12 deficiency and gluten sensitivity

The first thing she does is put patients on an elimination diet as there is often a history of sensitivity. After that she recommends rebooting the digestive system with high quality pre and probiotics and then supplements of vitamins they may have become deficient in

We have also identified a link with the MTHFR gene which is involved with absorption of B group vitamins and it’s why you need high quality B vitamins because if you carry faulty copies of this gene you cannot break down certain vital B vitamins to access them, they just sit in your blood stream unabsorbed but a blood test with just show adequate levels (B12 and folate)

B12 has been a game changer.. I'm 65.. suffered over 30 years. I self inject b12 every week £1 per ampoule from Germany.
I also use a tens machine.
I use a dry herb vape and vape cannabis on a flare. ( Tried CBD drops too) prefer the real stuff.
( no it doesn't make me high.. ).

@Tomnooktoldmeto interestingly I have to take a vit D supplement via my GP as my levels were very low, and I'm quite sensitive to dairy and gluten. I shall look into the Vit' B and MTHFR gene further as all knowledge is helpful. Thank you.

@QueenofTheSlipstreamVM The Vit B deficiency seems to be quite a common theme, so as I mentioned in my post to QueenOfTheSlipsteamVM I'm going to look further at that. Do you find that your B12 injections stop the spasms?
I have a tens machine and found it useful when switched on, but as soon as it stops, the spasms return, often for the worse, so have given up with that.

The curable app is the best for me. Rewiring my pain response and calm my nervous system but I know from posting preciously it's not for everyone

@IHearTheMermaidsSinging B12 certainly helps with the pain profile as any iron deficiency increases pain. I also inject B12 weekly but if you decide to go this route make sure it’s hydroxycobalamin or methylcobalamin if taking orally because if you have one or more faulty copies of the MTHFR gene you cannot break down cobalamin it’s self

Also B12 requires folate and vitamin C for absorption so if you’re deficient again you can’t absorb it easily

until I took control I was actually in a wheelchair and could barely walk with 2 sticks. Now I walk unaided but I have permanent peripheral nerve damage because of the deficiencies and prior medical misdiagnosis but that is a very long story. Now I try to help where I can to stop others suffering