im wondering if anyone has tried reflexology for their symptoms of CFS and fibromyalgia? If so have you found it helps with muscle and spine pain, fatigue, anxiety sleep difficulties etc or is it again another waste of money? I also have severe osteo so I an unable to even go for a little walk and am finding I now have every symptons on the fibro and CFS/me list.
View 21 RepliesI'm just wondering if anybody else is being treated with Gabapentin for CFS? Has anyone experienced any adverse affects on these meds?
View 14 RepliesI'm a thirteen year old girl with an unhelpful doctor who literally doesn't want anything to do with me because I'm 'hard work' to diagnose. My family believes it's chronic fatigue syndrome, fibromyalgia or both. So that's the home treatment path I'm taking. My symptoms have been going for 6 months now and they are diarrhea, nausea, joint aches, headaches, fatigue, confusion, dizziness brain fog, tenderness, weakness and muscle pain. I've been tested for crohn's, ulcerative colitis, hypothyroidism, hyperthyroidism, parasites, dysbiosis, virus, infections and celiac disease. I also have eczema, restless legs, irritable bowel, anxiety and gastroesophageal reflux disease. I'm not under any stress at the moment.
View 3 RepliesI am just wondering whether anyone has had genetic testing to rule out causes of fatigue? Myself and my brother both suffer with extreme tiredness and I'm wondering if it's worth asking for it to be investigated down the genetic route.
View 9 RepliesI'v just been given gabapentin from my doctor. Does anyone else take this and how do you get on with it?
View 15 RepliesI have Primary Sjogren's Syndrome but was born Hypermobile. It was only after my present Rheumatologist diagnosed that I have scoliosis that I started to research. I found the Beighton Scale and the Brighton criteria which I match completely. I explained my research to my consultant and she agrees. However while she and another consultant both agree I do have POTS so far I don't have an appointment to see anyone to help me. I have had ECGS and a bubble ECG but they have been taken while lying down. Now the POTS I really noticed post the birth of my last son 29 years ago is getting much worse, can anyone advise me as it has taken decades to get this far, I don't feel time is on my side
View 4 RepliesJust wondered how other people cope with the family holiday. Being out of your normal routines and in a new place perhaps. What do you put in place to help you cope?
Being at home knackered is one thing but being in a caravan, apartment or hotel etc. is much different. Having to be mobile and do holiday stuff with the kids, can and is an overload for my system. Do you avoid going away because of things like this or is it just me?
The last 10-day holiday we took has taken me 4 months to get over! (Moreover, I was still feeling rough after 4 months…) I know I am lucky to be able to grab a family holiday, but I do wonder at times, if it’s more harm than good taking a holiday with ME/CFS.
I am currently applying for jobs, but I am unsure answer yes or no to the do you have a disability? question. I do have CFS, which does impact my life, although I am able to work. What do you think?
Went to see my gp yesterday and told her about my heart beat readings I've been having recently of 115 just to walk downstairs, 124 to walk upstairs, 135 to walk downstairs on a bad day. My heart rate goes up from 74 to 105 when laying down to standing. She took my heart rate as a sat there and it was 98. She's now sending me for an ECG. She thinks it might be to do with the sack or lining around the heart? She told me the official names but I was silly and didn't get her to write it down. Now I can't remember what she called. She said she has seen cases before.
View 3 RepliesI was wondering if anyone else diagnosed with ME is constantly thirsty? I've had all the blood tests (and have been diagnosed with ME), so diabetes is omitted. It seems to be worse on an evening and I'm always topping up my fluids with water and herbal teas-so plenty hydrated! It's not my worse symptom, but just wondering if it was common?
View 28 RepliesJust wondering whether people get any unexplained bruising or get easily bruised? I get them quite often and it's worrying me. My rheumatologist said that it can happen as our body is over sensitive.
View 12 RepliesI am a 32 year old female. My question relates to Exercise Intolerance. I am very unfit and am wanting to get fit for the first time in my life but whenever I start even an easy exercise program, I get really wiped out. I usually feel okay after my "workout" (barely a plausible term) session, but feel extremely fatigued the next day. Which interrupts my program. This can be very irregular tho, sometimes I can do quite a bit and feel fine the next day. I had bulimia, starting at age 17 for 10 years and am wondering if this is still the effects on my body. I have no other side effects from the bulimia. Apart from that I have suffered Chronic Fatigue Syndrome, but these symptoms disappear if I don't exercise. I have had my heart and lungs checked out, blood tests etc, all come back fine. Can someone please, please shed some light as to why I get so exhausted following even a small amount of exercise. It doesnt seem to matter be it cardio or weights.
View 1 RepliesAnyone smoke with CFS? I dislike drinking a ton so I was wondering if anyone smokes marijuana? I've seen online it's good for it and it doesn't make it worse... Anyone ?
View 13 RepliesHi everyone, I was diagnosed with CFS/ME a year ago and since having surgery last November it has got so bad that I am unable to return to my job I am only 22 and it's really making me upset.
I have had all the blood tests available and all came back negative apart from today my doctor called and said I have a vitamin D deficiency and has given me 3 months worth of medication. Has anyone else with CFS/ME got a vitamin D deficiency? Also did supplements help your CFS? Or even cure it? How long did it take for you to feel better?
I had stuff to do today that I could not leave. I have since had several dizzy spells. I get these when I do the school run. Has anyone fully passed out?
View 9 RepliesAs we were chatting about teeth earlier on the spectacles thread I thought I would start one specifically about ME and teeth.
I think I have mentioned this before, but when I saw my dentist a while ago and told him that I had been diagnosed with ME he informed me that if ever I needed to have a local anaesthetic injection he would give me one which doesn't contain adrenaline ....... because anything with adrenaline is a complete no no for ME sufferers.
One of the theories about the cause of ME as some of us know, is that for some reason we are unable to 'switch' off adrenaline as a 'normal' person would and as a result we just drain all our energy, and the only way to regain it is by resting. I am convinced that there has to be an awful lot of truth in this theory.
Several months before I was diagnosed with ME I had extensive reconstructive work done on my upper teeth (my generation didn't have fluoride toothpaste and many of us subsequently have soft teeth), and I often wonder if the dozen or so adrenaline injections triggered something. Also, I had a lot of amalgam fillings removed, and I wonder if the lead from these was released into my system during the drilling.
Who knows - but hopefully one day we will find out what causes this wretched illness :?
So folks ..... no injections which contain adrenaline.
I am currently waiting to see CFS specialist hopefully in the next two weeks. I am b12 deficiency and also have underactive thyroid. Since the end of February I have gained around 1 stone. I have an extremely fussy diet as I don't eat Red Meat, Fish or Pasta. My diet is mainly Vegetables, Chicken and Potatoes but have gained weight like nothing on earth. Before all this CFS i was doing exercise classes twice a week but now can't get out of bed most of the time. Anybody else have similar experiences? I still go for a country walk at the weekends when I feel up to it but apart from that I'm at a loss at how to shift the weight. My GP has been monitoring it but he said there is nothing we can do at the moment.
View 4 RepliesSeen a pain doctor who suggested I get mr thyroid checked although it has always been normal but he said I should get my parathyroid tested my gp has only ever done 2 test in his 25 years of being a doc.
View 1 RepliesI see most people lump CFS and ME together and they are not the same disease. They should be referred to separately as many of the symptoms of ME are not the symptoms of CFS. You can't die from CFS but ME can be a debilitating disease that can get progressively worse and CAN lead to death. So whichever one you are suffering from, what helps you feel better with CFS most likely will not help you feel better with ME. I am definitely on the upswing with my CFS. I walked almost 2 miles this morning and am feeling better every day. I think I am on the road to a total remission again. ME patients really have to monitor their activity levels so as not to cause themselves to go backwards and aggravate their condition. Don't lump these conditions together because they are totally different. Think of them separately and they need to be treated separately.
View 59 RepliesHave any of you begun to recover or recovered significantly from CFS?
I want to get a feel for if recovery is age related (do younger folk recover more quickly?) Or if it's related to how badly you suffered from CFS in the first place.
I've that broadly, younger folk get better quicker. I've also heard that if somebody has had sudden onset, maybe caused by a virus, then they are more likely to recover in about three years.
What do you know?
I've been on LDN - Low Dose Naltrexone for a few months now. It's been a bumpy road and the journey has had both positive and negative points.
I've been adjusting the dose but in so far the 3 main benefits I can claim from it are:
- some sleep improvement;
- less pain intensity;
- apparent normalising effects on some blood markers such as LDH (lactate dehydrogenase).
However I feel exhausted to an unbearable point and continue prone to inflammation. I've decided to continue treatment with LDN because I've read extensively about it and many authors say it may take up to a yer to come to fruition.
Meanwhile I've resorted to naturopathic medicine and I'm under treatment as well.
We're all different in the way we react to medications and because I've been reading so much suffering here with so little hope of remission that I thought of encouraging you of not giving up and trying new things.
I would like to share with you a recent study on LDN whose Abstract is:
"The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic painJarred Younger, [corresponding author] Luke Parkitny, and David McLain
Abstract
Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome. We review the evidence that LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. These effects may be unique to low dosages of naltrexone and appear to be entirely independent from naltrexone is better-known activity on opioid receptors. As a daily oral therapy, LDN is inexpensive and well-tolerated. Despite initial promise of efficacy, the use of LDN for chronic disorders is still highly experimental. Published trials have low sample sizes, and few replications have been performed. We cover the typical usage of LDN in clinical trials, caveats to using the medication, and recommendations for future research and clinical work. LDN may represent one of the first glial cell modulators to be used for the management of chronic pain disorders.
Keywords: Anti-inflammatory, Chronic pain, Fibromyalgia, Glial cell modulators, Low-dose naltrexone, Microglia"
Younger, Jarred, Luke Parkitny, and David McLain. “The Use of Low-Dose Naltrexone (LDN) as a Novel Anti-Inflammatory Treatment for Chronic Pain.”Clinical Rheumatology 33.4 (2014): 451–459. PMC. Web. 13 July 2015.