Struggling big time

jan5987

Hi everyone 
I am 62 and my husband is 62
my husband and myself have always worked.
I got fibromyalgia in 2009 and ME in 2011 before that I was physically fit always at the gym working out, looking after my daughter who is 34 now, I met my husband in 2000 online we married in 2007.
in 2012 I got diagnosed with osteoporosis of my spine, was able to still potter about in the house/ garden etc go for short walks which we liked, taking photos so I was functioning. In April 2021 it all changed I woke not able to able to move my legs, it’s a long story so will try shorten it, paramedic’s said it was fibromyalgia, I said it wasn’t I had flares, but lasted a few days this was different, had severe extreme back pain and back spasms never had the amount of pain ever like this, got diazepam it helped,I couldn’t see a doc cos over covid so just kept giving me medication which was making me worse as most medication affects my stomach even with tablets that protects the lining.
the pain was 24/7 and into may when I had a x ray said no fractures everything normal, through the summer the spasms lessened and the back pain was manageable but I was on the list to see physio, nothing triggered it as my husband who was working did the housework and made dinners so I never did heavy lifting, I was told by physio in may it’s fibromyalgia flare,I also had a numb thigh on my left side and tingling in my stomach  and numb toes on my right leg for three weeks but again out down to flare up then in November it started again with spasms in my back the back pain extreme and  I could hardly move, I can take diazepam so was given that it took edge off it.
December was a blur the pain was off the scale I don’t remember much apart from 24/7 pain and on Christmas Day I rang 111 in tears saying I can’t cope, they said ring your doc for an appointment I did as not open till four days later, still wouldn’t see me but upped medication to codeine which I was told to take four times a day, paracetamol 4 times a day and diazepam twice a day, I didn’t know what I was doing and no one listening apart from saying it’s a big flare up.
saw physio in December said same and saw physio in January said exercise and moving about will make it better! 

In February I saw a different physio who said she didn’t think it was fibromyalgia and should have an MRI scan which I had two weeks ago, the pain from February got worse as I fell on a rug in our house, it was a bad fall but I didn’t see anyone as I couldn’t wait hours in A&E so I never got checked, I went head first into the living room wall I slide across I cut my left knee and my left elbow and my right wrist did something to it as it’s painful every day but I can write with my left but I am right handed, my wrist has never been checked it’s very painful.
my head was painful as it was the right side of my head it was like that for a week it didn’t knock me out and my back has been extreme since and I need a walking a stick to do small steps in the living room and never used one before, but in January I got one from the hospital and a grabber, I am waiting on a OT assessment as I rang social services to see what help I can get as docs useless.
my results of the MRI are as follows

I have wear and tear of my neck and it’s affecting a disk.

I have Wedge fractures all over my back he said from the osteoporosis but I had a fall remember I told you so I think from that as well as was a bad fall, he said I have cracks in the middle of my back could be over the osteoporosis.

Lower back nerves bulging out he told me which ones but I can’t remember all of them.

Multiple levels of degenerative changes in my back and neck.

 Lower back two discs bulging out but not touching nerves.

Inflammation of the sacroiliac joint.

I am thinking now as my right hand been sore since February hard to use it that it’s a fracture as they didn’t check that but I think it is.

So will ask doc about that.

I have to have another MRI done and blood tests but MRI  of the sacroiliac joint as they don’t know why I have inflammation 

I think this was from the fall as never had anything like it before. We both feel depressed and fed up.
it’s just ongoing and know one knows what is going on.


I miss taking photos, going for walks and doing the gardening.

my daughter is getting married in five weeks and it was supposed to be 2020 but with covid it was changed to this year and I haven’t been able to help and have so many appointments and just not coping at all.

sorry for the long post.
 

Alex_Alumni

Hello @jan5987 please don't apologise for the long post, it's really helpful for us to understand how you're feeling at the moment, as well as what's happened in the past.

I'm glad you're in touch with social services, what's the latest you've heard from them? Is it the upcoming OT assessment? That would really help with getting some support in place for a better quality of life day to day.

I'm a bit concerned about what's happened to your wrist, did you manage to get it seen to since your nasty fall?

Thanks for explaining your MRI results, it's really no wonder you've been in such pain. Another MRI should hopefully pinpoint the cause of this inflammation. Then hopefully everyone can take steps to find a treatment will help.

I think it's natural to feel the way you both do given the situation, the uncertainty around it can sometimes add to the anxiety and hopelessness we might feel. You've done a positive thing by posting here today, sometimes just talking about things can help ease the pressures we feel.

Having someone to listen can help too. Have you and your husband ever considered counselling for the way you've been feeling, or IAPT services? I know you've said the docs have been useless, but perhaps look into what support you could get. 

I can also recommend calling Samaritans if you are ever having a day where you're struggling with your mental health, they can help take your mind off things and feel heard. You can call them on 116 123. 

Lastly, I'm sure your daughter understands why you can't help in the way you were expecting to, but I'm sure you are helping and supporting her even just by being on the end of a phone. Have you spoken to her about how you're feeling? Perhaps you could have a chat about things you might be able to do in different ways?

Keep us updated with your next MRI test, and please let us know if we can help support you or your husband further. If there's anything that doesn't make sense, just ask, and take care today.

jan5987

hello Alex 
thank you for your kind words.
i only spoke to them on Friday and this morning someone rang me and said someone will be in touch but when they don’t know and I mentioned some adaptations small ones and they said they don’t have the money for those ones and I can buy myself which didn’t help, we live in the north of the uk and it’s hard getting things that you need but will see what happens and a long waiting list to see an OT:(.
i don’t know it’s the area of my thumb and first finger and part of my hand hard to explain but I had pain there before but it got worse since the fall and no one has looked at it as I can’t get to see a doc it’s crazy as when I spoke to one he said go to out of hours and they said go to A&E and when I rang A&E they said we do emergencies so go to your doctor I give up.
i think I explained as best I could I don’t understand it all.
yes it does help to post and explain it all it’s better out then in.
i am on a waiting list for counselling said it’s more likely be six months so what can I do, my husband won’t he has social anxiety issues that have got worse since covid but it’s not covid it’s because I was shielding so having people in the house was making me worse and so I only asked people in if they had a mask and he found that me not opening the door like normal has made him worse.he finds it hard to talk to anyone but me as well.
thank you for there number.
my daughter bless her is deaf she does understand and we FT and txt it’s hard for her too she has her family as well. I have two small grandchildren.
yes we did have a little chat about it but she is worried how I will be.
i will do as soon as I know.
thank you so very much your very kind. Take care too.

woodbine

@jan5987 hi and welcome from me also, the only pearl of wisdom I have to offer is when you get to see a GP (and it's slowly improving) ask if they will refer you to the Pain clinic at your local hospital.

chiarieds

Hi @jan5987 - I think it's difficult when you have diagnoses, but other causes are not also ruled out, as they can happen. Not being able to move your legs, later numbness & tingling would not be associated with fibromyalgia. If you have bulging disks not touching the nerves, then this doesn't explain things either.

I can only speak about the above from my personal experience as I was diagnosed with a bulging disk at the L4-5 region when I was about 19/20, which I was told didn't explain my pain.

With your unfortunate fall, yes you tend to put out one hand out to protect yourself. It can result in a fracture (a Colles' fracture), but can also result in damage to some ligaments, which is just as painful, & can last longer than an actual fracture; again I speak from personal experience, unfortunately. Obviously this needs looking into, so good you are going to do so. Hopefully your further MRI will pinpoint your back & sacro-iiac problems too.

As Alex says, kindly let us all know how you get on; as woodbine suggests, a pain clinic may also be a way forward for you depending on the results of your MRI.

jan5987

Thank you very much Woodbine I will ask I have so much to ask tomorrow will write it down.
thank you chiarieds thank you very much yes it’s very difficult I agree but I tried to explain to the docs and physio it just wasn’t fibromyalgia but no one ever listened and because I have the diagnosis of fibromyalgia everything I have is always linked to that and to be honest all this should of been looked at last year, but it wasn’t, the tingling and numbness and tingling on my hand the numb toes, the tingling in my stomach and some very unusual symptoms but all that happened was physio to see and docs upping medication it was crazy.
the not been able to move my legs yes it was scary and paramedics gave me diazepam and said muscle pain as have a diagnosis of fibromyalgia and when the diazepam worked I could move them so they left and said see your doctor but doc refused and that’s how it’s been and now I still haven’t seen a doc.
thank you so much in explaining that to me and I know I should of had it checked but I will tell the doc tomorrow.
how do you feel now? 

I really hope it will do as I thought that all my back had been done as it was a full MRI but it wasn’t, I was there for two hours.
yes I will do definitely let you all know. Thank you 
take care 

jan5987

Teddybear12 said:

Hi @jan5987 Welcome to the Community. I am so sorry that you are having such a difficult time at the moment. Have you managed to read any of the experiences of other members in the Chronic pain and pain management section? Once you have your OT assessment hopefully they will be able to see what additional help you can have. We are here to help and support you where we can. Take care.

jan5987

Hello
thank you the message 
yes I hope so as so many things going on. 

I really appreciate all the help. Thank you you take care.

jan5987

Hiya 
I just spoke to someone who is passing on my message to the OT it was terrible she wouldn’t let me explain everything just said what do you want us to do!!!!! Said we don’t give out small adaptations as you can buy them, you have a walk in shower and stair lift, what else do you want help with so I tried to explain and phone went off!!!!! I give up.
i am so upset and angry.

jan5987

hello
i am going to ring Pals up after I have the MRI scan it’s not on all of this.
i don’t know who the OT is,as what I said to this woman in social services she said she would send the information I said to the OT!!!! 

It’s just so many hoops to go through crazy.
thank you.

jan5987

Alex_Scope said:

Hello @jan5987 please don't apologise for the long post, it's really helpful for us to understand how you're feeling at the moment, as well as what's happened in the past.

I'm glad you're in touch with social services, what's the latest you've heard from them? Is it the upcoming OT assessment? That would really help with getting some support in place for a better quality of life day to day.

I'm a bit concerned about what's happened to your wrist, did you manage to get it seen to since your nasty fall?

Thanks for explaining your MRI results, it's really no wonder you've been in such pain. Another MRI should hopefully pinpoint the cause of this inflammation. Then hopefully everyone can take steps to find a treatment will help.

I think it's natural to feel the way you both do given the situation, the uncertainty around it can sometimes add to the anxiety and hopelessness we might feel. You've done a positive thing by posting here today, sometimes just talking about things can help ease the pressures we feel.

Having someone to listen can help too. Have you and your husband ever considered counselling for the way you've been feeling, or IAPT services? I know you've said the docs have been useless, but perhaps look into what support you could get. 

I can also recommend calling Samaritans if you are ever having a day where you're struggling with your mental health, they can help take your mind off things and feel heard. You can call them on 116 123. 

Lastly, I'm sure your daughter understands why you can't help in the way you were expecting to, but I'm sure you are helping and supporting her even just by being on the end of a phone. Have you spoken to her about how you're feeling? Perhaps you could have a chat about things you might be able to do in different ways?

Keep us updated with your next MRI test, and please let us know if we can help support you or your husband further. If there's anything that doesn't make sense, just ask, and take care today.

jan5987

Hi Alex 
I am so fed up, I think I told you about I am waiting for another MRI scan, well they said they will do the referral to the same hospital which has an open MRI and said it was sent on Friday when I got the results, it wasn’t as I found out today and can’t find my referral and think it’s gone to another hospital which I can go cos it’s not open!!!!! 

I just want this scan done as I am getting more stressed and I can’t sleep and so much pain. 

Thank you.
oh and I managed to see doc about my wrist he didn’t know what is wrong and said I have to book for an x ray of it.

L_Volunteer

Hello @jan5987

Thanks for keeping us in the loop about what is going on for you. You are doing really well at being open about how you are feeling and what you are experiencing.

I am sorry to hear what they have said about the MRI scan has not played out when you got the results. That sounds really frustrating for you and understandably so. How are you feeling about the results?

Do you know when the scan might be? The wait for the scan sounds stressful and means you can't sleep and are in so much pain. 

Well done for speaking to your doctor about your wrist. I can hear how that might make you feel nervous. Wishing you the best of luck with your x-ray! 

Please keep us updated with how you are doing, we are all here for you 

jan5987

L_Volunteer said:

Hello @jan5987

Thanks for keeping us in the loop about what is going on for you. You are doing really well at being open about how you are feeling and what you are experiencing.

I am sorry to hear what they have said about the MRI scan has not played out when you got the results. That sounds really frustrating for you and understandably so. How are you feeling about the results?

Do you know when the scan might be? The wait for the scan sounds stressful and means you can't sleep and are in so much pain. 

Well done for speaking to your doctor about your wrist. I can hear how that might make you feel nervous. Wishing you the best of luck with your x-ray! 

Please keep us updated with how you are doing, we are all here for you 

jan5987

Hi thank you, I just can’t cope with it, everything is closing in on me and if I could walk I would vanish as it’s too much to cope with and please don’t say the samertrians as I tried them it didn’t help.
i don’t how I feel about those results yet I haven’t processed them but now I am waiting for physio to answer and they answered after 20 minutes wait said I need to put you through to someone else who deals with it and now it’s a half an hour wait!!!!! 

It’s the second MRI that the referral has vanished!!!! On Friday I spoke to physio said it had gone to the open MRI but I rang them it hasn’t, I am sick to death of it all.
thank you, if it was my wrist I could cope better but I can’t have an x Ray till I know what is happening with this MRI.
 Thank you.

Alex_Alumni

Hi there @jan5987 I'm sorry to read about the distress the OT caused you, it's sounds very frustrating. Speaking to PALS is definitely a good idea, as they can support you in raising your concerns.

I'm sorry to hear about the hassle with your next MRI, it's not what you need at the moment. I know it's a pain to chase up, but hopefully you can let them know that location isn't suitable.

I'm glad you've seen a doctor about your wrist, did you manage to book an x ray at the time? Is booking it something he can help with?

Ross_Alumni

Hi @jan5987

I just wanted to follow up here as it has been a few days since we heard back from you. How are you getting on? I hope you were able to enjoy the bank holiday weekend.

Jo_2022

Hello @jan5987,

Thank you so much for reaching out to us. I am so sorry to hear about the Pain you are experiencing. Sometimes sharing your feelings with another person helps to get things off your chest.

Personally I have had back pain and I completely understand the pain you must be experiencing. I think coming to terms with a diagnosis can be difficult to accept. People living with pain often question the meaning of their life, and pain can cause a great deal of suffering, and affects things such as work, house chores, family life, relationships, hobbies and socializing.

You may like to have a look at this link, it has information about a Pain Charity:  https://painconcern.org.uk/helpline/

I agree with woodbine, a Pain Management Program in a Pain Clinic could prove beneficial for you. Also, perhaps trying things such as, a TENS Machine, Acupuncture, Swimming, a Steroid Injection Nerve Root Block, and Surgery might give you pain relief. Please ask your GP or Physiotherapist about best treatment options.    

You are a strong and brave person, and I hope you receive the help you deserve.   

Good luck with your daughter's wedding! All the very best to you and your husband for the future!

Do let us know how you progress. Sending you a hug                        

jan5987

Ross_Scope said:

Hi @jan5987

I just wanted to follow up here as it has been a few days since we heard back from you. How are you getting on? I hope you were able to enjoy the bank holiday weekend.

jan5987

Hi Ross 
thank you for asking.
i am  just resting and my husband is doing the garden.
thank you.
hopefully after Easter will hear when I can the MRI.
take care
jan

Ross_Alumni

Thanks for getting back to us @jan5987, I'm glad to hear that you are finding some time to relax, and hopefully the gardening goes well for your husband What is he doing? Just giving the grass a trim or something more?