Hello, I am writing on behalf of my wife who has had fibromyalgia for 10 years. Over the past 2 years things had improved dramatically, however two weeks ago she started to get the most horrendous muscle spasms in her hip/legs and she's not been able to leave the house since.
Does anyone else get these really intense muscle spasms? We are off back to the pain team to see what they can do, if anyone has any suggestions or any meds that they know work for it I would be really grateful if you could let me know please?
I think in theory massaging should help, however her legs are so bad to even touch them gently causes intense pain.
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faulknerp
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Thanks, will do. Rather unhelpfully the next gp appointment is not for over a month, so I called 111 who forced the GP to do a telephone consultation instead. The GP's response? Take some paracetamol. Great, eh? I am trying to find out if I can afford any private options like a private pain management specialist.
Thanks very much! After your post I googled it and there are so many people who say the same thing also, so it must work for a lot of people. Thanks so much for the tip.
Oh that makes me so cross!! 'Take paracetamol' - if only they could experience our pain for 24 hrs it would be interesting to see how their response to requests for help changed. Has your wife received any help yet? I've only just read your post.
I know, I wasn't there for that as it was a telephone appointment and I was at work but I was furious. She hasn't got any help yet but I am looking at private options. Thankfully we have some small savings we were trying to put towards a house, so I can use that. Not great but better than seeing her in agony for weeks on end.
Hi faulknerp welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.
It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.
What a caring partner you are to join the forum for help and support, you have surely come to the right place friend.
I get very bad muscle spasms, the top side of my back goes into big spasm quite a lot & it completely cripples me for a few mins. It goes all round my side around my ribs, so i know how it feels & it's not nice. I take amitriptyline which do help relax the muscles & i also take Quinine Sulphate and these also help, I find that if for any reason I have missed a quinine tablet, the cramps are worse. I even get my lower abdomin, I think it's my bowels seems to go in a spasm sometimes & i find it really difficult to stand up. I also get lots of small spasms which can sometimes go on for hrs. In my back, toes, fingers & sometimes get small spasms in my throat which is odd. I hope your wife manages to get some relief very soon.
Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.
Many thanks for you response, I really appreciate it. I think we are struggling in particular because we also have a 2 year old daughter and I work as well as being my wife's carer. But we'll get there, I think it's just finding the right help.
After she has these spasms they cause so much after pain that she can barely move. She's only left the house once in a few weeks and not being able to play with our daughter is destroying her.
I am trying to find out if I can get her to a private pain management specialist possibly. We just can't wait 6-8 weeks for the NHS referral, especially when they will probably just say she's already on tramadol so there's nothing else they can do.
Oh bless you, I'm not surprised your struggling, it's very difficult looking after a small child & is a full time job at that age, that's without looking after your wife & working, you must be pretty much worn out my friend.
What has the GP said about it ? Has he just refered her to a pain clinic ?. I'm wondering if these muscle spasms are causing some kind of pressure on her sciatic nerves & that's what's causing all the pain and the weakness in her legs & this is not Fibro, I think doctors tend to put everything down to Fibro. Obviously I'm not a doctor but this sounds quite severe to me & i think the pain management team are more than likely going to know why she is having this awful symptom, but as you say it's a long wait & i think if you can afford to have a private appointment, I think it's a good way forward. Your gp maybe able to give you details of someone, it may even be a good idea to give her gp another visit & tell them that's what you will have to do because your wife can not play with her daughter, I think it may jolt them into some kind of action, I hope so anyway.
I wish you both well & hope you manage to get something sorted very soon, so she can get some relief.
I take diazepam and use Epsom salts in the bath, (the magnesium helps muscle spasms) when extremely painful. Does your wife take vit d ? Most people with fibro are low on this, which in turn also worsens the pain. Also, are you both sure it is fibro, if you cannot see doc and pain is crippling maybe go to hospital, where she can be checked and x rayed, maybe simething entirely different as it came out of blue and your wife had been coping well for so long. I do hope she gets some relief soon. Take care
Thanks for this. Interestingly at the start 10 years ago she was prescribed diazepam, but then GP's no longer want to give it to her as they said she could become addicted. I've always maintained that she's needed it, at the very least available for flare ups like this.
Any suggestions on how to get diazepam off GP's these days? Even the pain team refused point blank a year or two ago. Luckily we had a couple of tablets left otherwise I honestly don't know what we would have done.
Oh yes she 100% has fibro. Has all symptoms: pain, memory fog, etc etc. She has had muscle spasms like this before but not for a long time, and when they happened she was on a higher dose but that was taken down (at our request) a year or two ago when she was doing better.
These spasms are definitely amongst the worst I have ever seen her have though, and it is playing havoc with her other normal fibro symptoms.
I feel so sorry for your wife, I know exactly how she feels.
I spent many a time in hospital them thinking I was having a heart attack! Found out after the 4/5 th time heart is fine good it was my stomach that sent my heart muscle into spasm.
For her legs swimming or if she can't swim walking in water help.
The hardest thing is getting there and in the water, ask for hydrotherapy.
That should help.
Thinking of you sending a hug for both of you, to many people forget about the Pearson who is doing the caring, and they need help as well.
I think people with fibromyalgia are the most incredible people in the world. I watch what my wife goes through each day and am astounded at how well she does. When I stub my toe I probably complain more than she has done in the 10 years she's suffered from fibro. She's gone through these awful muscle spasms with barely a complaint, she's doing an amazing job at trying to see it through and holding it together.
Well it's funny you should say that. My hubby was diagnosed with chronic fatigue syndrome only 18 months ago and it can be very similar to fibromyalgia.
His words were I don't no how on Earth you have coped with this for so long.
He lost his job as he was a class 2 wagon driver and there not aloud to drive a wagon with this.
We all have different strengths his mum is 84 and apart from slowing down she is fitter than us.
She struggles with walking but has no pain what so ever, to which we are happy for her.
Take care come on here and ask anything doesn't have to be about fibromyalgia just rant if you feel like it.
My hubby looked after me 2 years ago changing my dressing washing me, had a very big operation and couldn't even go bed had to sleep on the sofa for weeks. He slept on his fishing bed right at the side of me wouldn't go to bed had week or so off work, I sometimes think it was that what made him ill.
But people forget that the cares need caring for as well.
I was wondering whether you may have a Walk in Centre anywhere near you? These Centres don't need appointments and you can just go in and wait to see a doctor.
They are kind of a middle ground between your GP and the hospital.
If your wife is absolutely desperate, don't hesitate to take her to A&E. She shouldn't be left in agony for nearly 8 weeks.
Have you thought about changing your surgery? Another route may be to see a Rheumatologist privately? Whilst you are at the Rheumatologist s/he may be able to help on other things as well as pain? Just a thought?
The trouble I have always found over the years is after trying A&E several times it's just a total waste of time to be honest. Firstly it's the agony of travelling there and waiting for hours, only to be seen by someone who has no idea what fibro is or even worse just calls it "back pain" and then they just say well you need to see your GP.
We've seen a few rheumatologists, we know definitely what she has.I think it's getting her pain management under control we need to focus on, and then she will be able to do more preventative things like stretches etc to ease it.
No, don't worry - thanks for replying, no need to apologise!
After you said that actually I was reconsidering that this morning, may help get the right pain meds and also some kind of treatment like stretches etc to stop the spasms from coming back as often.
Hi there. Have to say that although my symptoms go into the teens I haven't had any of these muscle spasms, am I lucky or are they just waiting to pounce on me? I do know that heat helps me amazingly so perhaps if your wife can relax in a hot bath,take pain meds then she may be able to tolerate some massage therapy. It really really helps me,only financial constraints stop me having a massage frequently or I would gladly give over my spare room. When the massage bed itself can be heated to it adds to the level of relaxation. Good luck
Took your advice with massages, worked perfectly thanks and the hot bath with Epsom salts worked wonders. Was agony for her getting in/out of the bath but worth it overall.
My husband went on t'interweb and learned about Myofascial massage. When he massages me it's not heavy, only what I can tolerate, some areas are less sore than others. It does help to loosen the grip my muscles have on me. x
Took your advice with massages, worked perfectly thanks and the hot bath with Epsom salts worked wonders. Was agony for her getting in/out of the bath but worth it overall.
I've had severe spasms. They are so bad I can't move at all, I have been on the floor sweating profusley from the pain, I feel for your wife, it is horrendous. I take my usual meds, but in these circumstances I take diazepam...only as required. It relaxes the spasms brilliantly. Best of luck. Your wife is lucky in one respect, that she has you willing to find the answers. x
My GP prescribed them...solely for muscle spasm...I have them on standby, had the last box for about 6 months. I think if I over-used them he may not be so ready to prescribe. It's a shame because they work better than anything I've found.
My wife proved she doesn't abuse them and only takes them in an emergency, even cuts them into quarters to make them last. Even then no GP will prescribe them. I think the problem is when she sees the GP she gets a bit proud and naturally tries to make out things are better than they are, so they don't think she needs them.
When I took her to a private specialist a few years ago he said of course she needs them and wrote a prescription but NHS are not keen to do so.
Guilty of that myself, but sometimes we can't find the words to express how bad it is. Known my GP for 30 years so I always go in and make jokes...but there have also been times when he's passed the tissue box before I've even started crying! Hahaha maybe he just knows when I'm hiding behind humour. Can't you speak for her at the GPs? Maybe you could put it across better with no pride involved. I know it's difficult.
I now go to every single appointment..... one time I refused to leave the surgery until she got what she needed. I was in there for an hour and even then they refused to give her what she needs. That was in London, we have moved out and they're a lot better here in fairness.
Doctors have a great obligation to balance medication with quality of life they even call it QOL. Now if you can't leave the house can't engage in physical activity that would lead to self help,can't take part in any social recreation etc then it becomes obvious that if diazepam helps,if any QOL can be gained as a direct result of taking a certain medication then it is needed. Present both a pain diary and a daily activity diary, even if it is just getting downstairs. With this evidence it should be obvious that diazepam would greatly improve QOL you really should be prescribed them. X good luck ( I am disgusted on behalf of your wife)
Hi I got mine from my Doctors but will only give small amount at once.
You see sometimes my back goes into spasam and I can't stand at all and I mean at all.
So much so the my hubby had to make a bridge for top of our stairs so I could crawl to the loo, so that why I have them in it's the only thing that works along with the morphine.
Just ask for a few I get 15 at a time but only take them on bad occasions. And I don't get then often.
Hi there diazepam GP,lived in three different places since diagnosis. So terrifyingly Three different GP but I have never had a problem with diazepam being prescribed
I sincerely hope that you and your wife are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.
As the others have said, it would probably be bets to get this checked out just to have other medical conditions ruled out of the equation. I want to sincerely wish you both all the best of luck and please take care of yourself my friend.
Thanks very much. I decided to try massaging her every hour yesterday using something brilliant called Dynamint and it seems to have helped. Yesterday she didn't have the huge spasms at all, just medium strength ones. So that's progress. Today she says it feels more like the normal fibro stuff she's more used to. So I hope we've turned the corner.
Hi I use a vape pen with CBD oil in (medicinal compound found in cannabis, no side effects and no addiction , also no THC so no 'high' from it). It's legal to purchase.
I really hope you find something that helps relieve your wife's pain.
I get this and really bad since I had my daughter a year ago, it affects my walking as it's so painful to take a long stride, the pain goes into my bottom and upper thighs. I've to get an X-ray done to decide on next options.
Yes.i get them plus restless leg syndrome.my bone back of my right leg at calf comes out and doesn't retract for minutes.seems forever.im on tablets called methacarbamol.for it.ask your doctor.in the right dose they make brain think you've no pain.take mine as when on bad days.
When I have really bad leg and hip spasms i get a towel (hand towel for legs and bath towel for hips) soak in cold water, ring it out, then wrap it tightly around. The pressure and the cold really help me I hope it helps your wife. MUCH LOVE
I do understand how your wife feels. I have fibromyalgia in my arms and legs and they become very swollen. My flare-ups. Trigger spasms. I will also experience trouble walking. The pain is very uncomfortable.
The best thing that has helped me has been Biofreeze which you can buy from anywhere. I also increased my vitamins in take which did help. Blueberries are good to take for pain. Any antitoxin fruit or veg give you a little more support. A ten machine has also support me and helped my legs to relax. Sliming will also help once in the water.
I get dreadful muscle spasms in my back they come on with no warning. I cannot move not even to sit. I feel as though I am not being taken seriously I do not go anywhere now as it is terrifying when it happens and I am out.All I have been given is the odd diazapam which only knocks me out I have empathy with your wife
Last year I had severe pain in my hip. I was picking a prescription up for my partner. I had to hop back to the car.i nearly fell a few times.nobody helps you when you can't walk.
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