Looking for a community of people with ME/CFS

[budgiefriend]

Is there a separate forum for ME/CFS? I really need to know more and I would like to hear experiences of people with those illnesses. I believe that I have ME/CFS as well as my diagnosed FM, but my doctors have never acted like it's an issue to even discuss or find out.

[gilly25]

Hi I have also been told by the doc that I have fibro/ME/cfs I think they are all the same sort of illnesses but iam only being treated for FM. Iam not sure if they are all the same but iam sure that the lovely people on here will answer your question more accurate.i will keep my ears open and have a look on the internet. Hope you are as well as can be

[budgiefriend]

Thank you. I have joined the Andover CFS/ME group here on HealthUnlocked, as Mdaisy suggested. Thanks again, Mdaisy!

[Hidden]

Hi,

I also have diagnosed CFS but the Dr doesn't treat it, only the FMS. With regards the CFS he just acknowledges that I'll be even more tired and incapacitated. There doesn't seem to be much they can do for it :(, I was just about able to keep working with FMS but when the CFS (post viral) came on, that was it for me, game over. Let me know if you find anything out that is useful in addition to the Fibro advice, it would be very welcome news. Gentle hugs xxx

[Hidden]

Hi there, you have my sympathy! My hubby was diagnosed with ME/CFS and it took a sympathetic doctor and a lot of patience to get a diagnosis. FM and ME/CFS seem to have a lot in common as I have FM my hubby can appreciate where I am coming from which a great help to me. Personally the only difference I can see between his illness and mine is that he would literally fall asleep in the middle of a conversation where I just zone out thankfully thirteen years on he has recovered to about 80% of his old self and now its my turn it seems. Try a different doctor. I am sure if you go on-line there is a forum for ME/CFS, we never tried it.

[demaro]

Hi I have recently been diagnosed with ME/FMS I have symptoms of both illnesses, I don't think there is much difference in the symptoms I read somewhere that if you are more tired than in pain it's ME and more pain and less tired FMS luckily I am only mild to moderate at the moment and am being scheduled to see a rheumatologist to get necessary therapies etc. At the moment I am on 50mg Amitriptyline but to be honest it isn't having any effect on me.Still not getting sleep and still in pain.

[budgiefriend]

Thank you for your replies, everyone. You are saying pretty much what I have learned through reading. I am concerned that where my former GP kept encouraging me to get up and push through my pain, with a diagnosis of ME/CFS, they would be more likely to understand that doing this can make me worse, which it definitely does as I wind up taking days longer to recover from the exertion.

Also, as I had to fight so hard to get the DLA tribunal to take my condition seriously, I am hoping that when next I have to go through that horrible process, as I fear I shall, an additional, if accurate, diagnosis of ME/CFS with the Fibromyalgia would be more appropriate and show a more complete picture of why I am bed bound. As it is, I get told that they have never heard of someone with only Fibromyalgia and Osteoporosis being bed bound. This infuriates me. It is clearly an accusation that I am lying or exaggerating the extent of my disability and incapacity to work.

So, although like all of you, I have not heard of an effective treatment for ME/CFS, at least I hope that I will not be given bad advice based on an assumption that pushing and ignoring pain are somehow going to help me get well. I do have short periods of a few minutes to an hour or more a few times a week, where the pain gets a lot better and I feel almost able to get around normally. At those times, I can walk without assistance from my 4-wheel trolley to go to the toilet or open the curtains in the other room or make a sandwich. I do as much as I can without rushing or pushing until I end up feeling like I will faint or the pain comes back in a big wave, and then I go back to bed.

I would be interested to know how what I have just written compares to the others of you who have both conditions. We learn so much from discussing all the aspects of our illnesses. I think that helps alleviate the worries and uncertainties to some extent.

[KLR22 in reply to budgiefriend]

Please don't push yourself to do too much as this may do you damage and hinder your recovery if you have M.E. Your doctor won't know what's best for you but listen to you body. I don't want you to end up worse than you are already. Karen

[budgiefriend in reply to KLR22]

Thank you, Karen.

All too often people don't express enough caution about this issue--which includes doctors. This is one of the main reasons I feel it's crucial to get the assessment for M.E./CFS instead of thinking that diagnosis doesn't matter since there's so much controversy, overlap, and lack of clarity for. Some have said that it doesn't serve any real purpose to have a diagnosis because there is no treatment or cure for ME/CFS.

Despite symptoms that appear on lists for ME/CFS and rarely for Fibromyalgia, my doctors have never even considered my concern that I should be assessed for a secondary illness. I believe people working with both patient groups say someone with Fibromyalgia will normally benefit and grow stronger with gentle, gradually increasing periods of exercise followed by rest; but people with M.E./CFS can be made worse and even endanger their lives by pushing themselves to do more.

I try my best to pace myself and do only what is absolutely necessary, but I am completely alone. I have no family in this country and former friends stopped communicating one by one. I have are a cleaner/carer who comes for 1 hr to 2 1/2 hrs twice a week (I pay the high cost for this type of carer from my low rate of DLA, which doesn't totally cover it.) and a volunteer who visits once a week to chat and help with various non-work tasks like phone calls or taking me to a medical appointment.

The last time I went (accompanied by my volunteer) to my GP surgery, I was in agony for days after, and I have been worse since then. That was several months ago. Thank goodness, after seeing me struggle at her surgery, my new GP decided to visit me at home. I need dental work, mammogram, cervical smear, and eye glasses. The answer to my concerns about this? "I don't think that's going to be something you can do just yet." I can't get tests and dental work I badly need. I am only 61 yrs old. I feel I've been put out to pasture and abandoned in most respects.

It seems that people without family or money to pay for regular carers must become worse and worse, as we can't stop when before reaching our limit. If I didn't push myself, I would not open the curtains during the day, adjust the heating, use the toilet except when I feel well enough which is seldom, change clothes, bathe, or prepare ready meals, cereal & sandwiches.

Brushing my teeth can be agony if I have already done too much, as can getting myself back to my bed after doing some basic things in the kitchen and going to the toilet.

Because Fibromyalgia is considered non-threatening and not severe illness by assessment people and doctors, and certainly because DWP/ATOS try to discredit people whose illnesses cannot be totally proven by medical tests and a lot of specialist reports, we are let down maybe even more than some others. I don't know if a ME/CFS diagnosis or a statement from my GP and/or a Rheumatologist to explain what I have written above would make the slightest bit of difference when they decide what level of DLA to award in a tribunal. I never expect to get that benefit without an appeal, in any case.

Cleaning and housekeeping tasks are not among the things which are considered by people assessing for DLA. The tribunal at my last appeal made that abundantly clear. Only mobility and personal care are offered. I had to battle to get the lowest rates of those. Without paying for 2/12 hrs of cleaning to be done in my flat a week, I would live in a horrible state, so that's where my DLA money goes.

Without some online friends, my laptop computer on a hospital table over my bed, wireless keyboard, and being a good typist, I don't think I would have had the heart to go on. A person in my circumstances can't stop before they have pushed too far. I often struggle to get breakfast and give up before I can finish, retreating to bed with a cup of coffee and a couple of oatcakes. Sometimes if I manage to put my frozen dinner in the microwave and then go back to bed and then lie down while it cooks, I am too exhausted to go back for it until an hour or more later. Sometimes I manage to get it, but am too tired to eat it. I am seldom able to eat a meal without putting it down to rest between every few bites.

I have been assessed twice by Social Services and told that due to funding cuts, they can only assist people with 'severe needs'. Because I am not suffering from dementia or unable to move from my bed, I guess, I am classified as 'moderate needs'.

I don't know where to turn.

I would be very interested to hear from other people in a similar situation to mine.

Thanks again, friends at Health Unlocked, for putting up with my long post and for offering your emotional support and kind thoughts.

[KLR22 in reply to budgiefriend]

Do you know about the 25% ME Group, as well as the Facebook pages for severely affected ME sufferers? There are those on there who are going through similar situations as yours - you are not the only one and you are not alone. I do believe that you can have an eye test at home, dental checkup too although not treatment - I don't know details unfortunately. There are lots of groups out there so reach out. Thinking of you. Take care. xx

[budgiefriend in reply to KLR22]

Thanks for your reply, KLR22, I've heard something about the 25% ME Group, I <think> but I'm not sure. I have read some things about it. I am not on Facebook. I used to be and quit for a number of reasons, and I don't want to go back. However, I would read any public Facebook pages. But you can't comment unless you are a member of Facebook. If there is another place I can communicate with these people I would like to have a link. It is very difficult to get things at home. I iknow about the dental checkup, and that's okay, but that service is mainly for people with dentures and things like that, in care homes. As for the eye check, you can get glasses from home, but they cost a lot more than I would pay if I got them from Specsavers or Boots. I can get the check at home but still have to go out to get the glasses fitted. This is helpful, and I will be doing it as soon as I can. I have a volunteer who comes for a couple of hours once a week and we get through as much of this sort of stuff as possible. She will take me out for things like a mammogram, or anything else I need or want to go out for. But going out is extremely tiring and it takes so long to recover. I feel it sets me back a lot. At the moment we have a number of things on a prioritized list to get to, one week at a time. I am not sure what else can be done. I do appreciate your encourgment and suggestions.

[KLR22 in reply to budgiefriend]

The 25% ME Group also send a paper newsletter. Their address is 21 Church Street, Troon, Ayrshire, KA10 6HT. E-mail [e-mail]. Website 25megroup.org.

[budgiefriend]

Thanks so much, KLR22! I will look into that right away.