Just about had enough of this !!!!

Hi every one not been on here for a while,as I have been so ill. I have Fibro and Virol fatigue,have had them for 20 years and was living with it and could pace myself.....Most of you know that my health has gone bad especially this year.

Well now I am still like a mitchelin man body filled with fluid. I could not walk because my right leg was so heavy, now me other leg is nearly as bad!!

I can't get in or out of bed ,can't turn over, cant even use the toilet properly as my hands and arm go into spasm. I have to have my food cut up or they go. If I try to get up myself I fall and even with help nearly pull my husband over! My muscles spasm in my neck shooting over my head and the pain is horrendous. When I try to move my legs in bed they do the same! And now to top all of that I have a hacking cough ,and as it is not in my lungs it does not warrant antibiotic.

To say I am sick of this is an understatement . last night I was so upset as I am only 64 and my 87 year old mum can do more than me. I feel a burden to my OH and I am going to see if I can get into a home somewhere and let him live his life in stead of nursemaiding me!

All I get from the Dr's etc is Oh its your FB......don't see anyone else with this going on for so long......A flare I know can be bad and last a while but over a year and getting worse is not right somehow !

Sorry to moan this has taken me ages to write all this but I am so sad and just needed to get it off my mind x x x :-(

Gentle Hugs to everyone x x

26 Replies

  • Oh rainbow I am so sorry ....your last post I saw you were saying how the farrow wraps on your leg were working wonders , you had a slim leg and had lost almost a stone in fluid.... And were going to get the other leg done ...What's gone wrong .... That is so sad ..

    VG x

  • Hi Grumpy yes the farrow wraps are working and I have lost the water,but I still feel so ill. My husband is going to see about a second opinion on Monday. Can't all be down to Fibro and Fatigue x

  • You sound in need of a hug honey! I will send you a huge one. I sorry life is so difficult for you. How are your wraps doing have you got used to them - do you take them off at night - that must be bliss I have had my leg wrapped since February and I really do long to stand under the shower.

    I feel so sad that you are so down love and hugs xgins

  • Hi gins, tell me please, I seem to be reading that many of the fibro patients on here have leg wraps ect, I'm guessing it is because of fluid in the legs, am I right, and is this something that fibro causes, thank you for all the help u are giving us all .. Hugs Dee x

  • I had bandaging first they bought my leg up in red tender patches,then they tried again and I was in agony so had to take them off. They only did one leg for fear of the water going to my heart and causing more trouble! Then she tried the Farrow wraps ,they are like the wrist supports with Velcro....they worked and the upside is I get to take them off at night my leg is down now,and today we are starting with my other leg....just got to be careful any chest pains and I have to stop!.

    Thanks for the Hug need that at the moment x ((((((((((((((( :-( )))))))))))))))))))))))

  • Hi rainbow sorry to hear u are sooo sad, I know how u feel, I've had mine plus other conditions since I was 11 I'm now 72, and yes it does make uwonder when ever is it going to stop. But u must hang in there we are all here for you. The volunteers do a wonderful job, and they are in pain just like us and as bad as us,..... come on here every day and vent how u feel, sometimes it does you good to tell some one daily how u r feeling and how much u are hurting, it isn't that easy is it to tell your loved ones, please rainbow try to think positive, sending really gentle hugs to you...Dee xx

  • I am hoping legs are a different issue I have had fibro 23 years but my legs are fine .. Touch wood

    Vg x

  • Thanks Dee I have had fibro and vcfs for well over 20 years but this all seems different! I cant lift my legs into bed or up a step, and I cant move in bed only if OH pushes me over then I have to stay there. I do try to be positive but I am all out of fight at the moment x RD

  • No I can't lift my legs up onto the bed I have use my arms the best I can, I also can't go up a step without excruciating pain in the muscle especially thigh muscles, I cannot lay on any side but my back, as the pains in the legs get worse also arms so have to sleep on my back all the time and sitting up, it does get you down I know, and makes it worse when people that don't have it don't understand,.... we have muscles all over our body so I guess they are all going to suffer and be very painful, when I wake up no matter how long I've even to sleep the pains in my chest are very bad, but have been told so many times over the 60yrs that nothing can b done I figure I must accept it and only worry about things I CAN change, I do feel for you, hope u have a better day tomorrow gentle hugs Dee xx

  • Dee I think are legs are a separate condition. A few of us suffer from Lymphodema in the legs which makes them swell beyond the normal puffiness from hot weather. Mine get so big I have to wear size8 shoes with a width fitting for an elephant 6 e terribly difficult to get hold of. So the legs wraps are part of reducing this I have had triple bandaging for the last five months and yesterday my wraps arrived I am looking forward to gettiing used to them and being able to shower every evening - what bliss- keep you're fingers crossed for me that I get on Ok with them :) as I have to wear them forever. xgins

  • Thank you for the reply gins, sorry to hear you are suffering so much with your legs bad enough trying to walk on them with the fibro let alone what you have, I will certainly keep my fingers crossed for you and everything else for that matter, ...I know what u mean about the shower I haven't been able to have one for a few wees now just wash downs every day as I can't climb the stairs, my son in law finished building a shower downstairs for me yesterday, and I was able to have my first shower for weeks at 6.30am this morning, boy was it nice, so everything crossed for you gins and hope your not in too much pain with them ...Dee x

  • Gins you will find them so much better there is a knack to putting them on but it only took my OH a few try's....Goodluck x x :-) x

  • Rainbow, that is awful! If you put yourself into a home your OH could well be devastated. Have you thought of some form of home help while you are going through such an awful time?

    What's happened with the wraps you were using? Did they stop working? What has your gp said? I presume you are on medication for fluid retention, has your gp advised any others or perhaps a combination of medication?

    I really hope you get some help for you and your OH. I know you've had to be strong for a long time, please continue to hang on and see if there is anything else that can be done to help you. Sending a huge gentle hug your way ((())).

    Love, Becky. Xx

  • Thanks Becky, I just had had enough the other day and thought if only I could just disappear ! I know that is not the answer,but my OH has his own issues and I feel like I am adding to them! There is never a day goes by that I do not break down and cry,which is not like me at all.

    Thaks for your hug sending one back to you x ((((((:-) ))))))))))))))))

  • What does your husband think of you wanting to go into a home? I'm sure he won't be happy about it? Can you get help at home from social services? Please try to get some.

    This is a bad time but you can get through this. Stay strong and hang on.



  • We takked about it and he said no way,you have always been here for me now it is my time ! But he is so poorly himself......Social services and Adult care let us down..all they offered was half an hr 3 times a day on sat and sunday to give him a break. Just a joke!! I said thanks but no thanks.

    Thankyou for reading this blog

    RD x

  • For those of you with lymphoedema the Bowen technique will help. There is a nurse called Elish Lund who works in a hospice and deals with lympoedema. She has written about it. Look up lymphoedema on google, her name will come up. There are mobile therapists out there and even those who don't advertise as mobile may be willing to come to you.

  • Thanks Cat will try this !

  • Hi rainbow my heart goes out to u. I understand what you are going through I have thought this myself at times. but you have been so strong and brave to have made it this far.i know it can feel like there is no purpose to life but there is you have been such an inspiration to others and showed them how even through all your suffering you are still keeping on keeping on..and for that alone I salute you friend. .you are indeed a brave lady.xxx you have made me feel humble and not so alone. Ty..im sending u a sprinkling of healing angel dust to uplift your mind and a gigantic marshmallow hug to warm your heart and I wish you joy and happiness ? and respite from this horrible condition. Take good care of yourself and let others support you when things are difficult. We are all in this together and these wonderful supporters administrators and volunteers are so helpful and caring the do what it says on the tin. Love us joke with us and head us in the direction of people who can help us with things and ghat my lovely is more than this horrible government have done for us with we're all in this together campaign. Don't make me laugh..we are all in this together.group hug for fybromites. Xx ? ?

  • Thanks everyone for your comments, I am so grateful for your input on all of this x I am trying to sort my head out and doing Angel Meditations and Crystal meditations I wrote long ago.... just trying to get my balance back and the crystal ones to help me through!

    Thanks for all the hugs and kind words x

    Rainbow x x x ((((((((((((((((((((((((((((((((((((((((( :-) )))))))))))))))))))))))))))))))))))))

  • My heart goes out to you , im sending big hugs to ya . I watched my cousin suffer for 8months with her legs . Can I ask if you are currently taking tramadol for your pain , my cousin also with fibro had real problems with lymphodema and after seeing a specialist and having her tramadol changed to fentynal patches the fluid disappeared in a week , she hasn't had any more problems with fluid in legs . Xxxxxxx just a suggestion xxxxxxx maybe , maybe not worth mention to ya xxxxxx HUGS xxxxxx

  • Hi no I don't take Fentynal patches I did ask about them but because of my bowel problem Dr said best not too. I was put on Tramadol but it spaced me out and I just could not function at all ! I am now on co-codamol, Ametriptaline and water tablets. But cannot feel it helps at all. My OH called the Dr out today as I keep having choking fits when drinking or eating they are worse.

    Thank you for the Hug sending one back to you x (((((((((((()))))))))))))))))))

  • Hi Rainbow, so sorry you are going through such a hard time, I hope things get better for you soon xx

  • {{{{{{{{{{{{{{RAINBOW}}}}}}}}}}}}}}}} A little cyber hug for you my love, and I am sorry to hear this, but also a tad relieved, because I have felt like this ever since I had a coronary artery bypass op on April 29th. I was discharged to my GP and the local cardiac rehabilitation scheme, which I am due to start tomorrow, but am feeling absolutely terrible.

    Spent pretty much most of my days in bed since Thursday, I keep telling myself that 'this too shall pass' and to take each day as it comes, but this weekend, each day has got sodding worse!!! Am beginning to thibnnk that going to the Dignitas Hospital would be better than this. :-(

  • Hugs back to you (((((((((((((((((((((((((((( ;-) )))))))))))))))))))))))))))))) too!

    It is a horrible place to be in I am sorry you are feeling so low x I also have that saying,it used to work but as each day gets harder I really don't know anymore x

    Sorry not very positive today x Hugs to you x

    Rainbow x

  • hi i am sosorry that you are so ill i have fibro and other health problems i have lost count of the times the doctor has said oh its the fibro .i got another doctor who actually listens you could get a secong opinion .or go back and see your rheumatolagist .i hope you get the help you need fibro stinks ,softest hugs xx

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