lucylocket61
Expert
i got glandular fever first.
Mine started after my husband was made redundant from a job that he'd been in for 38 years. I think I had a breakdown as it a very stressful time. I started to feel dizzy all the time and couldn't walk unaided and would sleep constantly. My gp sent me for masses of scans and tests to check for a brain tumour, MS, lupus and anything else she could think of. I went to the library and looked at lots of different medical books and then came across one written by a woman who had ME. It described exactly how I felt so I went back to the gp and said I think I might have ME. She sent me to a doctor Patrick at Crumpsall hospital in Manchester as he was the only doctor able to diagnose ME. After all the pressure tests etc he told me that I had fibromyalgia which is linked with ME. I can't complain about my treatment as I was provided with an experienced ME nurse to help me find coping methods and how to learn to pace myself.i got glandular fever first.
My bariatric psychologist mooted fibromyalgia with me. After 2 nurses have mentioned it before hand. Mind you I'm having an internal bacterial infection going on at mo. Increasing my back and lung/rib pain.I took me 12 years, and a psychiatrist to get a diagnosis. I have anxiety and depression, but my psychiatrist knew there was more going on. You will be in my thoughts.
My weight loss team and GPs are helping me avoid steroids, for uncontrolled asthma and weakness/pain. Thank god.I have T2 diabetes controlled by meds and diet. I have just been diagnosed with Polymyalgia which is inflammation in the muscles of the body. My arms and right hip are mainly affected, my Dr has it classed as a minor complaint, which I was surprised at because of the amount of pain I am in. When I cannot stand the pain any more I take Ibuprofen long lasting which just takes the edge of the pain and I use a rub as well. The treatment for this condition is steroids, which we know doesn't mix well with diabetes and can cause weight gain, which I do not want having shed 2 stones and still going. I would be starting on a medium dose and then reduced over time until I was on a maintenance dose. A blood test is used for diagnosis so ask your Dr to do one. What are the thoughts of the community think about steroids and diabetes. Sorry for rant.
I'm encouraged to pace my weekly responsibilities but sometimes not possible. With young kids something always crops up.. Like now school closed so more food shopping and maintenance of home and hygiene. Partner moans through it all. Sometimes.I have CFS/M.E. as well. In fact, the diabetes was picked up when they did the barrage of tests to exclude everything else - there is no test for CFS, it's diagnosed by eliminating everything else it could be. I was also severely vitamin D deficient, but the huge supplements they gave me made no difference to the CFS. And if you really have got CFS/ M.E. you can't exercise through it. One of the key diagnostics is PEM - post exertional malaise. Any activity causes severe muscular pain, and a crash in energy levels, usually the next day. For some people graded exercise helps, but that has to start with tiny amounts and build up incredibly gradually. Even that is controversial because it's made a number of patients worse, even rendered them bedbound.
I struggle with LCHF and CFS/ME. I often don't have the energy to cook, and can only shop once a week. I try to make a stew, chicken or lamb with lots of vegetables and very little potato, once a week. That feeds me for 4 days, but even with a chopping machine it exhausts me. I made one yesterday, couldn't get out of bed this morning. Just chopping a few veggies causes acute pain across my shoulders and I can't stand for more than a few minutes. The rest of the week I eat omelette, fish, or tinned soup if too tired to cook. I eat porridge sometimes - less than 20 grams doesn't spike my sugars, but that's individual. I snack on cheese and nuts - too much cheese, and that has put my cholesterol up. Also eat dark chocolate, and I know too much of that. It's the one thing I haven't managed to give up.
I try to plan ahead so that energy goes into the important things like getting food and cooking it. But if I have a shower, I can't cook the same day. If I go to the supermarket I ride their in store scooters. But with CFS/ME, mental energy drains the battery as much as physical, so just driving around, avoiding all the people who ignore anybody not on two legs, uses up the energy for that day.
Since Christmas I have had a bad flare up of the CFS/ME, and a corresponding weight gain. Partly because the little exercise I was doing just walking round the house, I can't do. Partly because I struggle to cook and eat the right things. These two illnesses are hell together. And if you think the NHS is useless with diabetes, you should see what they're like with CFS/ME. Despite the WHO classifying it as a neurological disease, the NHS is still trying to use CBT for it. Having suffered from depression for over 30 years, and fought my way back from the brink over and over, held down a demanding full time job, and cared for elderly parents, I can categorically tell you there is nothing psychological about this illness, and you cannot think your way out of it. I know, I tried. And made myself so ill that I lost my job. The only thing that works for me is pacing and rest. Do a little....do nothing...do a little more.
Don't know if any of that helps, but hope so. Wishing you all the best dealing with these two illnesses.
@Angelofthemarches created the thread.Thank you @lucylocket61 for creating it.
Yes. It is one of the frequent symptoms.Call you get insomnia with CFS ?
I'm getting 2hrs more (max.6) since starting pregabalin 150mg. Ibuprofen and co-codamol an hour before bed.Yes. It is one of the frequent symptoms.
I have T2 diabetes controlled by meds and diet. I have just been diagnosed with Polymyalgia which is inflammation in the muscles of the body. My arms and right hip are mainly affected
My husband has Polymyalgia and even strong painkillers does not have any affect on it He was told only steroids would work and he took them for about two years reducing to a maintenance dose. It went into remission and the doctor stopped the steroids but it came back after about 18 months and during the interval when he was not taking the steroids he was diagnosed with T2 which the doctor informed him was probably steroid induced He was not told at the time he was taking them that this is what could happen. He now again on a low dose of Prednisolone at a level that keeps the pain at bay and his glucose levels and weight is really good . He has just had a blood test for his diabetes review and his HbA1c was 40 so his doctor is happy with that but she worries more about his bones as long term steroids can make them brittle especially at his age he is 85 so he takes a once a week tablet as a preventative
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You know when they say 'pace yourself'? well, when I am bad with CFS pacing myself is not an options. Even breathing feels like hard work. I lose any choice about what to do or when, just keeping breathing and getting to the loo is a mountain to climb.
and yet I still dont qualify for any sickness benefit because I can type.
Just to let you know that eldergarth, was diagnosed on Wednesday with cfs and fibromialgia. He now has to wait for a treatment plan to be put in place .I was told by Dr who ran Chronic fatigue clinic in Belfast (now retired) that I couldn't be diagnosed with CFS as I had diabetes (T1). He refused to do the tests and when he retired the clinic was discontinued. My GP agrees I do have CFS but I never got the official test. Interested in see how you get on re results.
I hope I don't even have fibromyalgia but GP wants to wait til after my op to investigate.I didnt realise you have ME/CFS too : (
I will do , we had to change hospitals as Ron wasn't getting anywhere at our local one. Two years of attending different clinics and nothing . Two hours at Derby royal and he gets answers .Thank you for the update @tina_marie
All the best to you both, and I really hope that @eldergarth getting those diagnoses will help him to get the support he needs.
Please keep up updated?
And we all know not due to obesity as I wouldn't say your weight to height would construe that.My story was that around 2 years ago I was in a job I loved, my own home and living the dream. I had been to my docs because of an illness I couldn't shake of and bloods were taken. At 3am the next morning I was woken by heavy knocking on my front door the hospital had sent a doctor to my house as I had hba1c of 138 and was taken into hospital needless to say was diagnosed type2 that day. I did start getting things under control but then everything started to fall apart and was finding it hard to do my job and ended up taking time of. My health worsened very quickly and ended up retired on health grounds within a couple of months and as a result I lost my home and no longer living the dream.
In the past 6 months or so I now use a wheelchair to get around and have had 3 suspected heart attacks and been diagnosed with unstable angina as well as other health problems so within 2 years I have gone from being fully active to almost fully wheelchair bound and still not 100% got answers to why or how.
I'm just hoping that the CFS clinic will have the answers for me or know a person that does.
I know that some don't see CFS as a illness but as a joke or excuse to throw a sicky but I wouldn't wish this on anyone not even my worsts enemy to be in pain 24/7 that keeps you awake for days and drains you that much that you can't do the most simplest things and wonder if this will ever end. I am so tired but I can't sleep because of the pain anyone got a baseball bat
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