Hi…
Today is a very painful day but also a good day….not due to the pain but because I have the pain, because I faced a fear.
I wrote earlier about the horrific car journey I had with my son in Febuary. I can’t express just how horrendous it was but it involved me crying down the (hands free) phone to my mum and then my sister, and then my mum again about how poorly I felt, how far I still had to drive and how I was such a bad mum and that I didn’t think I could do it. I thought Bear and I would be stranded for days whilst I recovered and how would I care for my son during this time and…and…and……..
I would have pulled over and slept in a roadside hotel but I didn’t have my Fentanyl patches with me (I try not to take them anywhere as they are a restricted and very strong drug).
We made it home and that was that.
Anyway. A few weeks later, my sister and I took my son to a tropical butterfly world, about an hour away from home. I used to work as a nanny just one road away from this attraction and so it was a journey I had driven 10 times a week before becoming ill.
I drove there fine but obviously was unable to have an afternoon nap. That would have looked weird.
We headed home and 15 minutes into the journey, I was struggling to stay awake. The tiredness hit me like a brick wall. I did all the tricks- air con on. Radio on. Windows open. I could not stop my eyes from closing and I soon realised that I wasn’t going to be able to control it.
Thankfully, for this reason or for if I am unwell, my sister is insured on my car. I pulled over and swopped places.
Within 5 minutes I was asleep with my head against the window. I could not stop it. It terrified me.
Some of it could be down to the pain medications that I have reduced but still, I can get very tired, very suddenly.
So. Last night, after a good nap and with the aid of two cans of redbull, back to back, I drove to one of my closest friends sophisticated hen do at a fabulous Italian restaurant, again, not so far away from the tropical attraction.
I stood on crutches for 15 mins whilst we all arrived and then we sat and had a wonderful 10 course taster menu. It was gorgeous. I spoke to ladies that I’d not seen since before I married, let alone since my son! It was so nice. We were a bit raucous and had a really fun night.
This is only the 4th time I’ve been out since I became unwell in August 2012. Wow. I have missed so many birthday celebrations and get togethers and I was so happy that I went. My friend told me that she didn’t think I was going to go. I have canceled and declined so many invitations and events over the last two years. She told me that she knew how hard it was for me and thanked me. It meant so much to her that I went as she is one of only a couple of friends that ‘get it’.
I even stayed until 11pm and managed the drive home without a hitch.
Thank you Redbull!!
Good old ‘car selfie’. Shame I couldn’t smile. Photo bombed by my trusty tens machine. God bless my tens machine!
I know redbull goes against my clean juice regime but until I am better and off all the meds, I’m not sure what other option I have. Every med comes with a ‘Warning- could make you feel drowsy. If you feel drowsy, do not drive it operate machinery.’
I know that it’s common to have this warning but I have so many factors that make me tired before the meds, I feel like I’m losing the battle before I begin.
Today I feel as though I’ve been hit by a bus. My legs will hardly hold me and I feel weak and horrid but I did it. I drove further than a few miles in my safety zone. I socialised. It has to be good for my head and my general well being.
I mentioned in the title, a new problem. Is it a new problem or is it a somehow missed contributing factor if not the cause of all my ailes?! (I wish it were so simple. Maybe it is?!!!)
My latest month worth of meds arrived, all neatly organised into morning, mid- morning, afternoon and night. My patches were there and the brilliant c-view dressing that I wear on top to keep them in place. Then there was this.
Vitamin d with calcium.
It had my name on it but I’ve never had it before and my Gp hadn’t mentioned the need for these to me.
I was reluctant to take them until I was sure they were for me and low and behold, after a quick phonecall, I found out that my consultant rheumatologist at the hospital had written to my gp, asking her to prescribe them to me, after taking a full and final set of bloods before discharging me with Fibromyalgia and Hypermobility, neither of which he can help me with.
I was a bit taken aback. I’ve been tested for a vitamin D deficiancy before as my symptoms fit the effects but was told I was ok. Is this a new thing or has it been missed? I can’t help but get excited that maybe this is the answer! Something as simple as this! Take these tablets and I’ll get better. I’ll recover from a condition that has no cure.
Here are the symptoms of a vitamin d deficiancy:
Symptoms in adults
- General tiredness, vague aches and pains and a general sense of not being well are the common symptoms.
- In more severe deficiency (known as osteomalacia), there may be more severe pain and also weakness. Muscle weakness may cause difficulty in climbing stairs or getting up from the floor or a low chair, or can lead to the person walking with a waddling pattern.
- Bones can feel painful to moderate pressure (often more noticeable in the ribs or shin bones). Not uncommonly, people have a hairline fracture in the bone which is causing tenderness and pain. Bone pain often also occurs in the lower back, hips, pelvis, thighs and feet.
Source: patient.co.uk
What are the symptoms of vit D deficiency?
There is no clear pattern of symptoms. In fact many people remain asymptomatic despite low levels. But here are the more common symptoms
- Fatigue
- General muscle pain and weakness
- Muscle cramps
- Joint pain
- Chronic pain
- Weight gain
- High blood pressure
- Restless sleep
- Poor concentration
- Headaches
- Bladder problems
- Constipation or diarrhea
Source: drfranklipman.com
I had already looked into vitamin d as it was one of the first blood tests I was given. I’d be interested to find out exactly what my levels were like and really look into how it has played a role in my pain.
The first list of symptoms from patient.co.uk is my life. That’s me. I am exhausted, I have vague aches and pains (on top of the specific ones!) and can often reply to a ‘how are you?’ with ‘I don’t know. I just don’t feel well’.
I have definite muscle weakness, more noticeably in my legs and yes, as the article suggests, this does cause a huge difficulty when it comes to getting up and climbing stairs. I hate stairs. I go from feeling ok to jelly legs and needing to rest by the time I’m up there. My walk has horrifyingly been described as a waddle too. I tend to rock a little bit when I’m not using my crutches. I can’t help it and I’m not really aware of it. It’s just how I get around!
I have general bone tenderness but the scariest sentence to me is:
‘Bone pain often also occurs in the lower back, hips, pelvis, thighs and feet.’
That’s me. This is me. The above is me. Who I am. What defines me right now.
The pain in my feet can be unbearable, even when resting and I have severe lower back, hip and pelvis pain and quite often have thigh pain but I put that down to muscle ache from walking it doing anything.
From the second list of symptoms from drfranklipman.com I can say yes to them all. Except high blood pressure as I don’t know that.
So is all this a coincidence? I am very likely to have low vitamin d as I was pretty much housebound for a year and that would put me into a category recognised to be at risk but could I have been lower for longer than we think?
I’m going to request my blood test results from the last couple of years and try to find out. It would be interesting and if just crunching this giant tablet, morning and night, makes me feel even just a little but better then hallelujah!!! I will bow to the sun! If we saw much of it in the UK that is.
Two studies have been completed and the data has been assessed and published, about whether vitamin d supplements can improve fibromyalgia.
I’ll post the links to three articles that discuss the results and you can make your mind up.
If anyone thinks that they maybe vitamin d deficient then please consult your dr and ask for a simple blood test.
Taking vitamin d suppliments when they are not required ie: if your blood level is within normal range can be harmful.
This information is provided from nhs.co.uk
Links to the vitd/fibro study;
http://consumer.healthday.com/bone-and-joint-information-4/pain-health-news-520/vitamin-d-supplements-may-help-ease-fibromyalgia-pain-study-683928.html
https://www.vitamindcouncil.org/health-conditions/fibromyalgia/
http://www.healthcentral.com/chronic-pain/c/5949/149400/fibromyalgia/
I hope that this might help just one person that reads this.
Yes mam I totally understand I was diagnosed 2yrs ago as being vitd n iron deficient n also found what you found they both carry the same symptoms I experience daily however much they do help they don’t help enough so in my case they haven’t solved .so the mystery continues to find something to help alleviate my pain I’m in constantly. You know how the doctor always ask on a scale of 1 to 10 where pain level my answers always a 7 or higher�� I feel for everyone of every person that has pain on any level and I pray someone figures out the right answer sooner than later I’m so very tired of the constant pain it’s ruining my life and continues to take my dreams away no matter how hard I fight to keep them. God bless you all n may you have a pain free day��
Oh Natalie, I’m so sorry that you are hurting so much. Constantly living with a pain level of 7+ is relentless torture. The low iron must have left you exhausted as well, on top of everything else.
Sending you kind wishes and good luck x
Oh Hannah! Thank you so much and kind wishes,hugs,and prayers to u. I do feel tortured I became a godmother 4yrs ago and it breaks my heart that by the time Its time to go
home I sit in the car balling from the pain level of 10 or greater n trying to calm down enough to drive an hr home. I love her so much n it kills me that going out to do anything is pure torture. I pray n thank God I made it through another day. But honestly a lot of the time I wish it would all just stop cuz I just can’t take it anymore. I miss my life I haven’t worked in 8yrs which I miss a lot, I use to paint n draw but pain levels are never down enough to get anything accomplished. I love crafting n crocheting but can get burnt out fast n my fingers stop wanting to work anymore. I’ve always dreamt of being a mom but my husband has decided for himself no kids and won’t tell me why. I’m soo,unhappy. The one friend I do have here my goddaughter mom I’m finding out isn’t much of a friend at all. She always makes plans w me then I find out the last minute she made other plans ugh if I wouldn’t have double checked I would’ve put me through all the pain to get ready n drive an hour for nothing. Also she tends to take advantage of my/our kindness so lately she only contacts me as a last resort for a free babysitter. I’m furious that she has the nerve to ask me to watch Sadie while she n some friends go to a movie, I’ve been trying for 2yrs to get her to go to a movie w me n she never does also I figured I’d get to know her friends to but nope I have to find out one Facebook that she had parties or book club etc. That she said I was totally gonna be coming yet seems to forget about me when she does have them. Omg! Lol sorry I will say bye and thank you again: ) my pains gone up a notch so best go. Hope you’re doing good;)
I don’t think there is much worse than being stopped from enjoying the joy of children. Your god daughter will love you so much and as she grows she’ll know just how special you are and how much effort you pit in to help your relationship grow. I’m so sad for you though. Losing the ability to work takes a huge part of our self esteem and worth with it and not being able to paint, relax and be on another world for a short time must be so sad. Could you set your self up with a little organiser box with all that you need, right by where you sit and start doing just little bits at a time? It’s so important to try and find some ‘me’ time other than sleep! I really feel for your whole situation. The friendship one is what many if us have been through whether we have an illness or not but when you do have something like this and your effort is just that little but more precious…well that’s just sad. Could you try and talk to her about the spoonie explanation? Might it help her understand? Maybe gently approach how much you enjoy her company but feel a little left out as you live so far away? See what she says. It could well be that she hasn’t wanted to bother you or make you feel obliged.
Either way, I know it hurts.
Take care and rest
X