Weird Symptoms

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I’ve had Chronic Fatigue Syndrome for about 15 years. A few months ago, I began having some disturbing symptoms: tingling and burning sensations on the bottom of my feet, sometimes moving into my calves and upper legs, and less often into my arms. These symptoms seem to be associated with my energy level and often diminish in the evening, when my CFS fatigue also can diminish. When I expend the slightest energy, even talking, the symptoms worsen. I’ve had bloodwork, and nothing shows up. My blood sugar levels are normal. I’ve had a nerve conduction test: normal. My doctor is at a loss. The only thing he can think to do for my is a gamma globulin injection. Has anyone else had these symptoms? If so, what have you done for them?

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  • Posted

    Hi jackie I am unsure weather its the same or even connected but my left hip tingles. usually at night and especially if pressure is on it. I am always at my worst in the evenings so could be something in it.
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  • Posted

    Hi.. what you are experiencing is nerve pain.. its quite common with CFS/M.E.  Ive had ME for 20 years and the burning nerve pain only started with me last year. I get it on my feet and lowercalves as you describe , i also get in on my hands and face and all mucus membranes also are effected. Your blood tests and all other tests will appear normal.. the only thing that shows up on mine is a high white cell count.  THere is little treatment for it sadly but suppliments do help specifically Magnesium/B complex vitamins.. also amatriptiline in small doses can help with the nerve pain but it does take some time to get into your system. You will find it will come and go... its made worse by stress abd if your a woman hormone changes.. I can get odd weeks where i have few nerve pain issues.. then out of the blue it comes back and can last for many weeks until it settles down again.
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    • Posted

      Wow, littleme! Thank you so much for your response. One curious thing with me: when I eat items with sugar, like a Snickers bar, for instance, the pain often greatly diminishes and sometimes goes away for a day. That seems so weird to me. Have you noticed a similar connection? Any thoughts? These forums are so awesome, because they reach such a wide range of people in different countries. You're the first person with CFS that has mentioned similar symptoms.I really appreciate your response. Now why didn't my CFS doctor mention that? Means I need a new CFS doc.
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    • Posted

      There does seem to be a link with sugar levels in the blood and CFS.. it seems to be different from person to though. I myself have found found eating small amounts every 2 hours rather than meals really helps with the fatigue/Blood Sugar and overall issues .. Most people say that too much sugar makes it worst .. and i have to say that is the same for me.. but other like yourself report the opposite.. ive also seen many people comment with protien cravings.. and again they get reduced symptoms by keeping their bllod sugar level.  The nerve pain is one of the more rare symptoms .. but alot of people complain of what they call Burning/Tingling and even knumbness in there hands/Feet/Face not realising it is infact nerve pain.  CFS seems clearly to be a nurological condition affecting most systems within the body. It ca get scary when you get a completely new symptom out of the blue.. always go and get it checked out by a doctor smile  I find alot of doctors know little about the condition even though its now recognised as a chronic life limiting condition across the globe. 
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    • Posted

      Again, I can't thank you enough for your response. You seem very well informed and so articulate about CFS.  The tingling/burning/numbness symptoms I have started in September 2013. In other words, about 15 years into my CFS. They were new symptoms for me, too, and kinda scary. I always say that CFS is the gift that keeps on giving. Regarding the sugar connection, if I have too much sugar, I get ill, so I do have to watch it. Also, in the first years of the illness, I definitely needed protein, and symptoms got better when I ate high protein meals. Now, the protein connection is much lower, if I even have it at all. By the way, I live in Los Angeles. I assume you live in the UK?  I think CFS awareness is much higher in the UK than in the U.S. I just discovered a CFS doctor in L.A., and I'm going to make an appointment with him. This is largely thanks to your information, which has helped point me in the right direction. Is the drug you're taking a tricyclic antidepressant (amatriptiline)? I've been taking 400 mg magnesium and a vitamin B complex for 15 years now.
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    • Posted

      Yes the antidepresent is the old type .. its called Amitriptyline here in the UK (will have a different name in the USA but you should be able to cross reference on the net)  Its used widely in the UK for treatment of long term pain issues.. such as migraines nerve damage etc.  Alot of people with CFS in the UK are prescribed it as it helps with the pain also anxiety and sleep all rolled into one, and you get good results from a tiny does.. i took just 10mg for 3 years , but had to double it last years after i had abad relapse and started with the nerve pain.  It doenst stop the pain it just dulls it off enough for you to gain some control of your life again.  For the first 6 months i tried desperately to find a pattern to what triggers the nerve pain.. but after 6 months i gave up as it was clear that it was quite random.  The only clear connections after a year i can make is stress ( can be emotion or phisical) and hormones. MIne peaks at the time i ovulate and around my period.. and settles in between as long as i dont have any current stress issues going on.  Ive lived with it for a year now and like you at first i was very frienghtened and to be honest felt i couldnt face my life with yet another issue to deal with... the fatigue and nerve pain where so bad at times i almost gave u hope.  But i year on i see you can learn to live with alot more pain than you give your self credit for.. I mostly ignore it as odd as that sounds and it only gets me down when i have many syptoms going on at the same time.  

      MOst people with CFS seem to have a constant high white cell count.. which means the body is on constant alert.. this meand we burn alot more vitamins and minerals than ordinary people so the supplements are essential.  Magnesium B vitamin complex.. also fish oils and evening primrose oil to help with joint pain and stiffness. Also Zinc and vitamin C are a must.  I also Take High dose Garlic tablets.. they help thin the blood so reduce headaches etc and also are a natural anti viral, helping to fight of bugs of all kinds.  

      When you lok at the CFS thing as a hole its really quite scary .. all the symptoms that go with it.. there is a good booklet on it written by doctors who treat it here in the UK and also patients have been involved in it.. link below...

      http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/All%20about%20ME%20book%20Apr%2013.pdf

      Theres alot of good information on that site and a good group on the forums too. When you read some of their stories .. you quickly realise that actually your not doing too bad smile

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    • Posted

      Thanks so much for all your info and the link to the booklet. I realized a few months ago that I had to change my attitude toward my sympsoms. So I took a 6-week online course, for free, on meditation and mindfulness. No airy fairy stuff. Very secular, sponsored by the University of Massachusetts medical center. The course is geared toward people dealing with illness. I now meditate every day, and it does help with stress and depression. I feel so much better after reading your posts. Now at least I think I know what I'm dealing with.

      Emis Moderator comment: I removed the link as it was broken and also we do not publish specific links such as this. Please use the message service if you wish to exchange links.

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    • Posted

      Oh, another question. Did your nerve symptoms start after your relapse? Mine started during a vacation to another state, which used a lot of energy. When I got to our hotel room, I had to lay down and my heart was pounding for about 1 hour. That's when I can pinpoint the beginning of these symptoms.
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    • Posted

      One of your posts isnt up yet so ill just answer the one above :P

      Yeahhh my new syptoms started after i had a really bad urine infection that lasted 3 weeks, the antibiotics they gave me for it set off another bad sinus infection which last 3 weeks also and the nerve pain started in amongst all that. Thats why all my mucus membranes are affected with the nerve pain as it was the infections that triggered the relapse. But STress of any kind both emotional and phiscal can trigger a relapse.. its usually a combination of both.. your stressed from a life event and you have some type of infaction in your body at the same time.. can be viral or bacterial.

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    • Posted

      Thanks for your response, littleme. Don't know what's happened with some info I've tried to post. It regards a 6-week free, online meditation course I've taken. The course is sponsored by the University of Massachusetts medical center, and is totally secular, I've found that meditation can help with stress and depression. The course is gear toward people that are ill.
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    • Posted

      Yes i understand meditation is excellent.. a positive mind can overcome so much  smile I think they are a little funny with posting things that are not actually geared to the topic that the forum is about and any type of advertising. Which is why it hasent been allowed :P
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    • Posted

      Yeah, I figured that was the case. Because the course is free, I thought it would be ok to post. The person who runs the course is very well known in the U.S. (Jon Kabat-Zinn), and is obviously doing it for public service, rather than for personal gain.
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  • Posted

    I've only just been diagnosed with cfs after having the symptoms for about 7 month, but I've been getting the tingling burning sensation on my face in the last 2-3 month or so. It isn't painful really just very strange and sort of signals the onset of extreme fatigue. It really takes me to a deep Vipassana meditation experience where you scan your body and observe the sensations, I did have similar sort sensation during meditation. I do tend to have it at work and I think it is offset by stress. I haven't observed if sugar has any effect on it but I do tend to crave sugar a lot! And have been in the last 6 month, almost feel like dark chocolate is the only thing that keeps me going. I am intolerant to caffeine so can't have anything caffeinated ... 

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    • Posted

      Yay to dark chocolate! It's actually recommended by a very well-known doctor here in the U.S., Dr. Jose Montoya at Stanford.

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