Just need people who understand me to see how they cope living with CFS

Hi Jane, sorry to hear you are struggling. I just wanted to say that you have a serious illness and sound like you really should be getting government support. You are entitled to more than you know and sounds like you should apply for as much disability as you can. Not sure what country you are in but where i live in the UK it is a massive struggle to get the government to realise how ill i am. They say i should work and that i have to ignore the pain. Honestly this country is a joke if you have ME/Fibromyalgia. It has been a long hard struggle but i am waiting for a tribunal to get my descision changed and have had to seek the help of a charity to represent me at my tribunal. If you need any help or advice on getting what you are entitled to do not hesitate to ask and i will do my best.

Hiya jane. How are you feeling today. Im sorry to hear how bad things have got for you emotionally and financially. You should see what other help there is. Altho i havent as i know they'll take one look and think shes not ill. I hope and pray one day the goverment take us serious. Its such a battle every day .. id love to sit with the highest people and say you'v had the cold/flu right and you really thought i cant take this anymore wish it would go away and it did fully go away a week later well imagen it didnt go away and stayed a week a month a year 5 years 10 years imagen everyday something on ur body hurts nhs dont care in my opinion. 

Sounds like you dont get much support ? 

I think we all get told to 'get a grip shake yaself' 'go bed earlier ' 'eat better' blar blar :-) 

Your not on your own take care x

Thank you so much for your reply Andy, I too am in the UK. Worked 30 years full time and never claimed benefits before, so had no idea where to start. Applied for PIP back in June and had the assessment beginning of August. 4 weeks later still not heard anything. I am currently getting £13 per week Working Tax Credit. Been off work since 11th August as too ill to get out of bed but the SSP of £89 a week won't be paid until 27th September. So £13 is all I have. Went to see a benefit adviser at the local job centre that didn't have a clue.. told me to ring contribution esa line. To be told this can't be paid when still working! Apparently Universal Credit came into force in this area in June but no one seems to know anything about it. So so frustrating on top of your illness. I give up! X

How you feeling today Zoe... hope you are feeling okay is and having a "good" day.. sending you good thoughts and well wishes.. take care Jane xx

Oh that is just useless Jane. Honestly these people have not got a clue. I have had to go on universal credit but was told that was a bad move as i was judged to be fit for work. My sister was an NHS employee for 11 years and she had to stop working and is going through the same situation as a lot of us. The government health assessments are a complete joke. I would advise you to try and get some legal advice by emailing or calling citizens advice. When i moved back to my parents i was able to use a local charity called SARQ i think they are caled but are only for residents of southampton. It is really important to get some sort of help, check for charities in your area. Obviously you have the issue of currently being employed so need to sort things out with them. I am far from an expert in this but experience is teaching me so if i can help i will try. I would also recomend keeping a health diary noting all your symptoms and amount of time in bed etc just so your doctor and whatever government idiots you come up against know how hard your life is. Over the coming years i intend to use what energy i have to raise awarness, i have gathered some peoples stories and i want to hammer home what people are going through so if you want to get in touch with me then email that goes for anyone reading this. strength in numbers. Take care.

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Morning jane.

Im not too bad. Bit dizzy and my heads so cloudy but iv got a busy day and working at tea time so i have to be ok :-)

How are you xxx

HI KPD

I have no experience with it or heard of it but i find it very interesting that you think there is more knowledge in the UK about the illness than in the US. The UK spends nowhere near enough time, resources or money on research into ME as far as i am concerned but i keep hearing about research in Australia or the USA. Some of our doctors still think it is all in the mind and flat out dont believe in the illness. Anyway i hope you get some success with the meds.

Thanks for your reply, Andy!

There are many doctors in the US that still think CFS/ME is a psychosomatic illness and it does not have a physical cause.

Recently though, more in the medical community are believing that it is autoimmune disease. I belong to another support group on FB and they seem to be doing lots of research in Norway with drugs that help the immune system.

 Thanks again for your reply. KPD

 

You can mention anything about it here, im sure people will be interested. Most of my fatigue and pain comes through my shoulders.

Thank you. My husband is not very supportive so I try to be very guarded with my symptoms at home.  I know what you mean about the shoulders. I feel this disease is a shape shifter, making it baffling to the general medical community.  I just returned from Stanford where they put me on Valcyte and LDN.  Ironically, o did myself in by flying across the states in 2 days and returning to out-of-town company at my house for a week.  I know that stress can cause crashes, so I've decided to distance myself from my spouse and not engage in arguments with my 12 year old. Wish me luck!

Ps. Check out my blog if you have a chance

Www.meandcfs.com

Hi cmann30, 

I thoroughly enjoyed reading your blog and could identify with many of the things you wrote about! Wow, I think my mom also had CFS, as she spent many hours a day resting in bed. At the time, we all thought that she simply enjoyed napping. I'm so afraid that my daughter (now 22 years old) will come down with this horrible disease. It hit me like a truck at age 29. 

Would love to know how LDN worked for you. If you have a chance, could you comment on that. I have been reading some research about it lately, and it sounds promising. I'm thinking about asking my doctor about it. Thanks so much for sharing your blog. It was a great read. KPD

Thank you!!!  I'm currently taking 4 mg of LDN per my physician at Stanford--yes-it's a bit of a distance from Virginia, but I was so desperate, I think o would've hitchhiked.  I think he is going to increase my dose as he is raising my Valcyte too. This is supposed to be done gradually but lately I have felt like such s%#! that I'm increasing it faster; no side effects could be worse than I feel.   This disease is rapacious. 

I'm very interested to hear about your Valcyte/LDN treatment. By any chance, are you seeing Dr. Jose Montoya? How long have you been on these therapies, and have they helped? I live in Los Angeles, and am seriously considering going on LDN. I might also try Valcyte. I see Dr. John Chia, who is a well-known ME/CFS doctor and researcher.

Thanks so much, cmann30. I hope I can convince the infectious disease doctor to let me try it. I live in New Orleans, and there are not any experience doctors on CFS or at least I haven't found any yet. I actually visit him out of state, but I don't think he's the best. You said in your blog that you started with Dr. Lapp out of Charlotte. Is that you suggested the LDN? Thanks again for the information. I really do appreciate it. KPD

Hi again, Jackie. Please let me know if you end up trying the LDN treatment and if it helps. I'm seriously considering bringing this up to my doctor at our next visit. It sounds promising but do not want to get my hopes up too much. I'm not familiar with Valcyte. I'll have to read about it. Where is Dr. John Chia located and have any of the therapies that he has tried worked for you? 

Sorry about all the questions. I've been in a major slump lately due to hormonal changes after age 53. I didn't realize how much the oral contraceptives that I took all these years helped with the fatigue until I was switched to Hormone Replacement (which is lower in Estrogen and Progesterone) My OBGYN said she would let me go back on the oral contraceptives but I needed to understand the risks involved taking them at this age-increasing my chances of stroke or heart attack. So, I'm really looking for an alternative plan that will help with the fatigue. Good luck with you! KPD

Well, it's way too early to tell if anything is working.  The minute I returned to VA from CA I crashed and have been sick as hell since. Very frustrating and very depressing.  I saw Dr. Bonilla. He is an associate of Montoya and TOTALLY knows his stuff and seemed like he still held a fire for learning more about this beast of a disease and for finding treatments. I was in so much pain yesterday, I wanted to tear my face off!  Ha-take that to a GP. I'm also quasi interested in researching medical marijuana for the pain but I've always hated recreational pot because it made me anxious--that's a sucky side effect.  Whenever I feel well enough, I blog.  Theminute I observe any differences from the LDN and Valcyte, I will post it on my blog. Check it out!

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Hi, KPD--My next appointment with Dr. Chia is in December, so I'll probably start the LDN treatment then. He recommended it before, but I was a bit nervous about taking a new drug. I decided to accept the fact that any drug, with this illness, can make you better, worse, or have no effect. There's simply no way to know ahead of time. Dr. Chia is in the Los Angeles area, in Torrance. His wait list is typically 6 months, and he only sees ME/CFS patients. That gives you an idea of how many are suffering with this illness. You can go on YouTube and input "Dr. Chia" and I'm sure you'll get videos of some interviews with him.

Hi Jackie-I can understand feeling nervous about starting a new drug, but I think this one sounds promising. I hate to get my hopes up too much. After all, I've been living with CFS for 25 years now and I don't want my expectations to be too high. I do think I'm going to ask my doctor about it at our next visit. I hope that he prescribes it to me, so I can at least see if it helps. I belong to a closed group on Facebook and lots of people say that their symptoms of fatigue improved with this drug.

Good luck to you. I hope you get some relief from it. Please keep me posted. KPD

Hello

I am very sorry i have not replied. I had a bad spell then forgot all about coming on here. I will certainly take a look at your blog. Hang in there.