Is this the answer???

[Toonie8780]

Hello, I thought I would join this group to speak to others with ME/CFS which my GP says is the answer to why I have been feeling so bad. For months now I have been getting more and more exhausted to the point that it is taking over my life. I can't walk very far without my legs cramping and feeling like I am going to collapse because I am so tired. I struggle every day to get out of bed and I am having to have naps at work frequently. My neck is always stiff, my back is agony and I'm getting regular headaches. When I have good days, like this weekend when I picked apples off of the tree, I seem to really pay for it the next day and I am so tired and achy that I just have to sit around all day. I'm getting breathless and often have dizzy spells. Ive been going to my GPs for months asking what is wrong with me, I have had all of the blood tests which have come back ok so its nothing they can answer. I do have a type of bi-polar, Cyclothymia and the GP did question that but I am so acutely aware of my mental health after having difficulties for years that I know when its that which is causing problems.

Is it really ME, is this the answer? I just want an answer as its ruining my life, Im pushing myself to get up at 5 every day and get to work but Im finding it more and more difficult, I feel like I need time to rest but I can't take time off sick. Would having a "known condition" help with getting support from my supervisors? Sorry if I am rambling but I am still very confused and desperate for the answer to what is making me feel so terrible.

[Maggie-mae]

Sorry you're having such a difficult time. Your doc can refer you to a consultant who will decide whether you have ME/CFS - I would ask for this referral right away so you can know if it is this illness or not. A consultant diagnosis does help when looking for support from your employer and also in obtaining benefits if need be, in fact I would say it's essential. Some docs say you need to wait 6 months or so to see if it is ME/CFS but it's accepted that within 6 to 8 weeks it's clear that it's the type of fatigue particular to this illness, ie post-exertional fatigue. This is quite unlike other fatigue that's associated with other illnesses. ME fatigue comes after activity, sometimes later that day, sometimes the next and sometimes even later, and is accompanied with the other main symptoms, ie foggy brain, flu-type ill feeling and some have headache or pain or sleeping problems too. Docs refer to these symptoms as general malaise. "Jelly legs" is another symptom, where you feel your legs are not going to hold you up. My ME began with an enteroviral illness but others just seem to slip into ME gradually and some after inoculations or operations. A good idea is to look up the websites of the ME Association and Action for ME, the two national organisations as they will give you all the info you need.

Good luck.

[myhealthneeds in reply to Maggie-mae]

Hello. I'm a volunteer with MESiG in South Wales and we support people who have ME/CFS/Fibro. In Wales we don't have a Specialist or a Clinic to which people can be referred. This makes it difficult for people to be diagnosed and to get any support. I don't know where you live or if there is a clinic anywhere near you? I asked for a woman in the London area and there is one fairly near her but she's had to wait many months to get an 'urgent' appointment. ESA was insisting that she go to their Centre for assessment for work and she needed a home assessment but her GP doesn't agree with ME and would not sign for her to have a home assessment. So waiting for 6 months for an urgent appointment was not the answer. So, my point is that even if there is an ME clinic near to you, you may have to wait quite a long time to get an appointment.

One of the problems with ME is that the harder you work to overcome it, the greater the effect it has on you. I suffered from CFS a few years ago (severe exhaustion but none of the other symptoms) and I just rested the majority of the time until eventually it grew less and has now disappeared but it took a long time. What you must not do is push ahead when you have some energy, like you said, picking apples and then getting worse the next day. Take things very easy, even when you have a burst of energy. Famous people who get sick have to stop work and they have the finances to be able to rest totally and be looked after by others and get therapies that help them. Even then, it takes a long time to begin to improve and to begin to manage the condition. What is called 'the treatment' is now discredited (CBT and GET). CBT can help anyone with a chronic illness to cope but Graded Exercise Therapy for a person with ME can be extremely damaging unless it is done by someone who is fully aware of ME and it is just 'pacing', having a low enough baseline and only doing very small activities for very short periods. Pushing through the pain and exhaustion is very damaging and just increases the problem. Have you been able to follow the results of the PACE TRIAL and the outcome revealed recently?

All the best. Miriam

[Toonie8780 in reply to myhealthneeds]

Hello Miriam, thank you for your message. I am not sure about an ME clinic where I am in Bedfordshire, I am going to ask when I have my next appointment at the start of November. I'd rather it not be said that I have it and nothing more. I want it confirming and noted correctly as my job places people on unsatisfactory performance if sickness gets high and I'm currently pushing myself daily to get into work and carry on so I don't have any sickness. I'm hoping that if it's listed correctly then I'll be covered. I'd also like to get parking in the On site car park as I find it hard some days to walk in. It's not far but I struggle.

I'm afraid that people will dismiss me with thinking that I am just tired and I'll get over it as people don't really seem to understand how severely exhausted and in pain I am. Everyone gets tired and they see me as the same. It was hard enough to get my GP to take me seriously.

It's all still early days so I'm going to wait and see what happens in the next couple of months

Mel

[myhealthneeds in reply to Toonie8780]

I'm afraid that that is the name of the game. Even if you have a diagnosis people will always come out with trite comments. However you work place ought to take it seriously but then PIP assessors sometimes are nurses who seem to think that it is just 'tired all the time' and that the person can do things if they try. Sad but there we are. I've found that the best assessor are ones who were previously working as Paramedics. They really understand the situation.

[Toonie8780 in reply to myhealthneeds]

Your right I think it is like that. It's similar with my Cyclothymia, people don't understand that you have no control over your emotions etc, you get the "pull yourself together" attitude.

I guess that I am the same as everyone else when hearing ME and the main distress is thinking that you will always feel like this. Sick and tired of feeling sick and tired.

[Toonie8780]

Thank you Maggie-Mae for your reply. I will ask about referral as I don't want to just carry on and be forgotten. I've done some reading and the fatigue I have does fit, Also the fog, jelly legs, sore glands, headaches, painful joints and pain when walking. Amongst other things they seem to match but a professional opinion would help. I'm just about getting through each day with work and resting as soon as I get in and weekends but not sure how much longer I can manage. I just about managed a shower this morning and had to sit down to get dressed.

I'm sure it will all work out in the end but it's hard to carry on with the unknown

[Lcan]

I think you need to speak to your doctor and try to get a refferal to an ME/CFS specialist. Also talk to your supervisors, you may want to think about reducing your hours for a while. From experience pushing yourself when your body is saying Noooo, only makes things worse. Rest when you can, don't push yourself too hard. Rest a little do a little, that's how I'm managing at the moment. I am still waiting for an appointment with the CFS/ME clinic but at least I am on the list.

[MEdoingitsthing]

Toonie. I really hope you don't have ME but it sounds like you do. You mention dizzy spells. Look up Orthostatic Intolerance standing test. Get a heart rate monitor ASAP like Fitbit or similar, and a blood pressure cuff. If you have OI and your heart rate shoots up on timed standing test, that plus the Post Exertional Malaise (the fatigue that comes on with delay after mental or physical exertion) makes it pretty confident to diagnose ME/CFS. The pain sensitivity will get worse if you don't gain a full understanding of all the central sensitivity changes that are likely happening right now too. It won't respond normally to NSAIDs in my experience as it is neural-mediated pain... Which means your brain is making it worse...through the sensitivity problems. You may want to investigate Health rising or Phoenix Rising sites. Tons and tons of information. Anti inflammation diets and low leptin diets may help the pain and acute neck. Low Dose Naltroxone (4.5mg/day) supports microglial cells and gets them to deactivate and stop sending your body cytokinesis that worsen your pain and flu symptoms, and getting genetic testing (eg.23andme) to see if you have methylation blocks that may require methylB12 and methyl folate. Experienced physiotherapists will recommend Cranial sacral massage for that neck pain. The local CFS clinic has strong positive outcomes for acupuncture.

Above all though, prepare to cut back on work. This may get quite bad before it gets better. So putting support in place now is critical. You will likely make yourself very, very disabled if you push now when your body is screaming at you to stop. You need to rest, and pace. It is the hardest thing but essential to your long term well being.