Fibromyalgia and CFS

Hi. I've suffered from the above really badly for over 3 years. I also suffer from depression and another serious mental illness. My mental illnesses and CFS really compound the pain I suffer from with the Fibromyalgia. Daily life is a real struggle most days. I have little respite from the pain. The pain is worst in my hips and lower back and right arm. Thanks for reading. X

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  • Hi, fibromyalgia and CFS, depression, am I right in thinking you don't get much sleep,I've had fibromyalgia for about 30 ish years, years and I think the link is sleep, sleep, sleep.

    fibromyalgia is made up with lots of different symptoms, there's approximately 65 different ones all mixed up together and as much as we may like to think, why can't the medics tackle each syndrome one at a time but FMA actually fights the mess and that's why the medics are can't get rid of it, lol, with FMA, you may have been told it's all in your head, me to I spent years trying to get a diagnoses and why it was important to get the diagnosis and then I knew what I was working with, the fact being in my head.

    FMA is about 50% in your mind and that means if your painkillers work then thats the physical side but if they don't work then that's the part inside your mind, to sort that one I used a distracting method, jigsaw, playing a game or eating and there's many more of them.

    With CFS and FMS, you get both ends of pain and fatigue and you need to TRY AND FIND WHICH WHICH, Don't be doing lots of exercise because this will only make things worse over the next day or so.

    To do exercise it's quite easy lol, gentle stretching is all that's needed to keep you subtle and fend off the stiffness because if you just sit in a corner groaning and moaning you will seize up and the pains will be worse and at the end of the day the muscles are sending the wrong messages to your brain.

    I hope you get pain free or at least comfortable.

    Philip

  • Hi Philip luckily the meds I'm on knock me out at night. Thank God for small mercies.x

  • Do feel any benefits from the sleep?

  • What happens if you can't take pain killers due to heart issues, you can't move because is very painful and moving is not an option? I need muscle stimulation but how!? Depression kicks in because of the fact you can't do anything, anxiety kicks in because the pain is strong, of course there will be mental issue if you can't get help

  • Hi vickeyrey i cant take the widely prescribed NSAID painkillers because i had a bleeding stomach ulcer and ive had gastro-intestinal illnesses for 25 years ! So the only option my GP had was gabapentin (1200mg a day) and co-codomol 30/500 and they both help alleviate the pain enough for me to go out during the day for a wee while. Before I was put on these painkillers I had become literally housebound. I can relate to ur depression and anxiety as well. X

  • sometimes the pains can be controlled with mind over matter, so you don't mind and I don't matter lol.

    I was put on morphine patches when I was first diagnosed with RA and it helped cover most things lol but sleep is the one we all need more of.

  • You are so right Phillip. It took me a long time to learn that sleep is everything! My rheumatologist prescribed Zanaflex for me because of the autoimmune issues, fibro, latent effects from chemo and radiation and pain kept me from getting even 90 minutes of continuous sleep. Even though it's mainly used for ALS it allows me to get two to four hours of really good sleep and doesn't make me drowsy all day. Since starting it I was also able to reduce the pain meds to a fraction of what I used to take. I have my little night time routine, I warm my bed and keep my muscles warm but not hot, sleep in something soft and comfy and I read something light and not serious or answer mail to friends and loved ones for the last hour I'm awake. I know that may all sound silly or trivial but if I can get four hours straight of restorative sleep it means the difference between a good day and a not so good day. I wake up stiff and sore but it subsides quickly and is not as bad as it would be otherwise.

    You give sage advice as always Philip 😊

    Best -

  • I like ur bedtime routine πŸ˜ŠπŸ’›πŸ’šπŸ’›πŸ’š

  • Thank you 😊 it seems to work for me πŸ’•

  • I too have had Fibro for about 20 years. It started after a RTA in my work van. A lorry deposited its load on my van. He got a Β£150 fine and I got the life sentence. As it has been said, Fibro affects all the body, that is why it is called Fibromyalgia Syndrome. I started with it in my neck and shoulders accompanied by terrible migraines every day. The doctor wouldn't recognise these as migraines because they didn't show as the classical symptoms e.g. flashing lights etc. Mine are known as occipital migraines (meaning back of head). I eventually got the medication for this. Then it affected my legs and feet. At one point the chronic fatigue was so bad I couldn't walk down the drive. My legs would just turn to jelly. I eventually had a total collapse of my insteps and had to have surgery on both feet to correct this and also in my left foot had to have my ligament rethreaded. I try not to take pain killers as they don't really work. They help me to sleep at night which is important for Fibro sufferers as you need the serotonin production which sleep manufactures, to help with the pain. I have lots of interests to keep my 'all in the mind' part of the illness, which doctors believe is the cause, active. I have chickens to look after, I am a hedgehog carer, gardener, I sew, knit, love miniatures and any sort of craft work. So there is light at the end of our dark tunnel, it just means you need a very strong torch and plenty of batteries!

  • Thanks suzie2shoes. I can totally relate to ur legs going to jelly. I've experienced this a lot recently and it's terrifying when it happens when I'm in the town myself. I literally have to hold on to a lamppost or a railing until it passes..drinking a high sugar drink helps me regain the strength in my legs to be able to risk leaving the lamppost or railing and getting on my bus. It's happening more frequently and I'm so so scared I'm gony end up in a wheelchair. Thanks for reading. X

  • I did have a wheelchair when I had my feet operated on. But I set myself goals to walk a little bit further every day. Last summer was my best and I managed to walk 5miles. I try to walk every day no matter whether I feel good or not. It is surprising how good it makes you feel. We need oxygen more than a 'normal' person as lactic acid gets stuck in our muscles and unless you stretch them and exercise we stiffen up and it gets harder to do it the next time. Keep on going, don't give in to it. I just look at these athletes with physical difficulties. It is hard work, but worth it in the endX

  • Hi suzie2shoes I'm the same I try to get out the house and walk daily. I'm working with my physiotherapist regarding pacing my walking. It really helps with the pain and stops me seizing up. I must get back to doing my stretches..they really help with the Fibromyalgia pain as well. X

  • Gentle exercise is good. It is weird, I can go for quite a while with minimal symptoms and then wham back it comes. This year has been really bad. Probably the wet weather. I also live, according to my doctor, in the dampest place on earth. Not good!

  • Hi suzie2shoes i can relate to what it saying. U don't happen to live in Scotland do u lol. I do . X

  • Hi sjmrcfc73, No sorry I don't live in Scotland. I live in Nottinghamshire. I used to help to run the self help phone line for Notts and East Midlands Fibromyalgia. I also did the National Helpline for a couple of years. I found it very rewarding as some people were at their wits end with pain and depression. I stopped doing this when I opened my shop and found I couldn't do both. I still got people phoning me asking for advice. The medical profession simply don't understand the illness. They will try to tell you that you have pain because you are depressed. Utter rubbish!

  • I find family and friends and people in general are very non believing that fibro n CFS even exist at all . X

  • Then all I can say is they have no clue what it is like to go through hell every day. If they had the flu they would go to bed feeling really ill wouldn't they? Well that is what it is like to have Fibromyalgia!

  • Exactly. They've not got a Scooby! X

  • Absolutely and that's the main problem, people don't understand because they can't see it and they turn their backs on you then because you have so much pain and you stop going out.

    It help you to know who your friends really are.

  • I ran the southport FMS support group for 11 years, but stopped because I developed Vascular Dementia and I couldn't cope any more and I closed the group and some one else took it over for me. At one time I had around 2 hundred people on the books, lol.

  • That is a shame for you. I hope you are coping!

  • Yes lol for now.lol

  • Gentle but not to excessive exercise and stretches every day works wonders, I wish I could walk five miles a day, how far away would I be after a month lol.

  • Ah well that is the funny thing with Fibromyalgia isn't it? One day you can walk 5 miles and then the next you struggle to get out of bed and yet you have done exactly the same thing on both days. Got to be weather!

  • Ano it's mental how no 2 days r the same πŸ˜ŠπŸ’›πŸ’šπŸ’›πŸ’š

  • Maybe depends on your injuries, and did your FMS start because of the accident?

  • no accident it is just one of those things that just happen In the olden days they would say aunt so and so is predicting the weather as she is in pain again. I would wake up in the middle of the night and say its raining again or its a cold one tonight how did I know my body would ache in my shoulders arms and neck. it would hurt no matter what position I was in so bad i couldn't sleep good at all. I would have headaches too. I did acupuncture and all gone! stress was a factor as well. I can't go to doctors and get relief as it doesn't work for me I go to naturalpathic ones and they find the root of the problem and fix it that way. good luck with all of you.

  • Hi kimmiejo. Stress is a huge factor for me as well. It causes bad flareups in my fibro pain. X

  • You've been to hell and back, in the good old days it was hard to get meds and we had to cope no matter what, we look back now and think How the HELL did we make it the age we now are lol.

    Any type of trauma can start FMS off and like you say just one of those things, just happens.

    Philip.

  • It it so very wrong and like you say you got the life sentence and he had a smack on his wrist.

  • Yes! Do you know, he actually left the scene of the accident as well. He had his delivery to make of this long metal pole, which incidentally is the one which went through the front of my van as it slid off the back of his lorry. I wanted to hit him on the nose and I am not a violent person.

  • I had similar symptoms for fibromyalgia hurt all across my shoulders neck and back as soon as it started to rain or was winter. My body ached so bad. I went to a acupunturist and two visits and I am no longer in pain. Maybe give that a try

  • Do you have that on a regular basis?

  • Hi kimmiejo iv emailed a local acupuncturist for treatment. It's quite pricey but if it works itl b well worth it. X

  • I hope it does it helped me a lot I had 2 visits and my arms shoulder and neck area no longer hurt its amazing to me its cheaper then gong to the doctor and taking meds that only cover up the problem

  • Hi kimmiejo im so glad the acupuncture worked for u. X

  • Thanks kimmiejo. I will try acupuncture. I used to have terrible pain across my shoulders and neck. The pain in my middle back has flared up again. Stress is the cause for this flare up. Take care.

  • There is/was a solicitor who only or mostly deals with cases of FMS from an accident.

  • I had to pursue a claim when I was medically retired. I went to see so many specialists to prove my case. In the end they threw some money at me and hoped I would go away. I was so sick of medicals that I did!

  • It can be a long and lonely road, Brian Barr, if I recall properly you can find out all about him and his office, go to FMAUK.com .

  • As it was an accident at work - post office, the union dealt with the claim for me. They were so helpful (not). They couldn't wait to medically retire me as well. Cheaper to get rid of me and employ someone else. Am I bitter? Yes, I blooming' well am!

  • Hi sjmrcfc73 I joined slimming world and have lost over a stone , it's not easy for me as I can't exercise due to my crps . I am also being tested for fibromyalgia, my pain is mainly in my lower back left hip and left leg . I also have pain in my left arm after having surgery for skin cancer . I no longer work due to my condition. Going to slimming world makes me get out of the house that's another reason why I joined .

  • Hi littlemole43 .that's funny that u mention slimming world coz iv put it in my diary to got to my first meeting on thursday. X

  • I had Fibro symptoms too for a few years I only tried Ibuprofen to help and my body just ached no matter what but mostly in the winter or change in the weather to wet and cold. I did not go to a doctor I went to an acupuncturist and she did the needles and in two visits I am no longer in pain. last winter i did not hurt like usual at all my arms and neck area pain free for the most part. Ican move more freely why do meds that have side effects. try Acupuncture it worked for me

  • Hi kimmiejo am looking fward to the acupuncture. X

  • went to a acupuncturist here and pain is gone now I just have a nervous stomach and IBS that i am working on

  • Hi kimmiejo that's amazing the pain is gone. I got a reply from a local acupuncturist that I emailed so I'll b cin her wen she's back from hol next week 😊. I've had IBS for 24 yrs and have been getting treatment for it for 24 yrs. I ended up in hospital for 2 weeks with it before I was diagnosed. X

  • Research found it's does help a lot but it needs to be a regular thing, so then more and more money and the NHS will only do one area, our Fibro moves a lot lol.

    I like to hear things are helping us all to cope.

  • Philip, I had acupuncture through the NHS and it didn't make one iota of difference and I think it is as you said. We have widespread pain, so where do you stick the needles. In the end they asked if I would like my husband to learn where to put them. I think you can guess my reply. But more politely!

  • This could be so very funny asking him to learn where to put his needle, lol sorry lol

  • This is very like the joke about the nurse who approaches the patient with her hypodermic needle and says "Now sir you won't feel a thing it's just a little prick". Haha!!

  • Ur lucky gettin the acupuncture on the NHS. I'm paying for it 40 quid for an hour.i had acup 4 yrs ago.20 mins a week for my IBS it also chilled me right out. It worked wonders so I canny wait for my appt on Saturday. πŸ˜ŠπŸ’›πŸ’šπŸ’›πŸ’š

  • I hope it works I love acupuncture it has helped me in many ways. I had gotten in to sub floor adhesive glue it threw my eyes out I saw double and had a massive headache that would not go away the acupuncture melted the headache away in one visit. I was sold from then on.

  • Thanks kimmiejo I will let u kno how I get on. X

  • I've got an hour long appt with an acupuncturist this Saturday 😊x

  • I went to an acupuncturist once, I felt totally deflated after it.

  • I'm on Amytriptoline, that helps with sleep and helps increase your/mine pain lvls, I think sleep is a cure for so many things it's scary. Lol

  • I am on Amytriptoline too! Don't think I'd be able to sleep without it!

  • I have not had any trouble getting to sleep cos I'd lay down on the edge of my bed, I soon fell off lol.

    It's staying asleep.

  • Does nobody like what I say lol, not one little like lol oh well

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