Already have fibromyalgia, do I have CFS also?

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Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 6/6/2013 12:06 PM (GMT -7)   
Hi all

I have been having some strange symptoms recently and whilst most I put down to fibromyalgia (got diagnosed with this in March - have had pains since December) I am now wondering if I have CFS also?

So apart from the widespread pains I get everyday, my fatigue is also very bad...In beginning I would need lay down rests everyday for 1-2 hours, wouldn't sleep well in evening...very interrupted and never feel refreshed when awakening...this can happen in fibro also though.

Symptoms:

sore muscles and joints everyday
fatigue everyday (some days severe some days not too bad)
sore throat every evening
Low blood pressure / dizziness / lightheadedness
swollen right gland for 5 months now
very disturbed sleep, can't sleep more than 2 hours at a time
sore eyes
Tingling / buzzing sensations
nerve pain
IBS

I know CFS can go hand in hand with fibro sometimes, but I am confused and not sure if its both or just part of fibro?

Currently I am on Elavil (Amitriptyline) 30mg for pains, and sleep meds (taken as and when)
I also take
eve primrose oil
Magnesium
Glucosamine
Vit B Complex and Vitamin C
D - Ribose for energy

Is there anything else I can do for fatigue?

Does CFS get better? I am a mum of two and work 4 days a week..also excercising twice a week in the gym on a scheme as referred by my doctor..Im in the UK

Sorry for all the questions...hope you can help :o)

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 6/6/2013 8:21 PM (GMT -7)   
Wackers34, I am so sorry to have to meet you on this or any forum. But I do welcome you & hope you can get some answers to your questions. When I was dx'd with FM I was sure that was not all because I was so tired all of the time & had flu like symptoms quite often. I couldn't sleep & when I did I couldn't stay asleep. I was just so tired & sick that I just wouldn't let it go & was finally dx'd with CFS as well as FM by a rhuematologist. Your symptoms do sound a lot like mine so I think you certainly have a possibility of having CFS. Swollen glands & sore throat is not FM, neither is the tingling, buzzing sensation. The statistics are that 60% of people with Fibro have CFS, whereas, 30% of people with CFS have Fibro. So the statistics say you have a good chance of having it. Just keep talking to your Dr about CFS & if he/she won't listen get a second opinion, like I said I was dx'd by a Rhuemy.

As far as getting better, I have heard of some getting better but it is usually within the first three years I have read. They can go into remission within that time but after 3 years not so much.

I have good days & bad days but even my good days are very sedentary. I hope you can keep up with all you are doing, it seems like an awful lot. Just remember to prioritise & if the house doesn't stay as clean as you want it to don't stress because like with Fibro, stress is not good for us. I am glad you found us, take care of yourself. Many gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 6/15/2013 3:25 AM (GMT -7)   
Thanks Denise

CFS worries me more than Fibro, as I feel fibro can be managed somewhat, I will mention to my doctor again about it just in case. But I am in UK and my doctor who diagnosed Fibro thinks CFS and fibro are similar things..she is not very knowledgeable and I feel maybe a special clinic would be better.

I am frightened that if I carry on with the protocol for Fibro, on amitrilptyline - to help with muscle pain and sleep, on supplements including magnesium, trying to exercise and keep moving, that I may make CFS worse, if I have this!

Is it possible to hold down a part time job with two small children when you have both? or is it all very individual?

I am trying to rest when possible, I have a great husband who helps lots, but my two kids are very energetic and need constant enetrtaining.

I know people with fibro who can live relatively normal lives and have fibro under control somewhat, but can you get CFS under control?

Eek - sorry for all the questions
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 6/15/2013 7:56 PM (GMT -7)   
Wackers, for me my CFS is worse then my FM, it is what keeps me from working or really having much of a life, so it is my primary illness. I receive disability for both FM & CFS. I had to quit my job, that I loved, because I just couldn't do the job anymore. I was so tired & sick, I just wanted to sleep all of the time. I now take Tizanidine, a muscle relaxer & Trazadone, both for sleep. Since I sleep better I am a bit more alert during the day depending on if I am flaring or not.

My Dr is not very knowledgable about CFS either. I have had to learn all I can myself but like anything else you have to sift through the muck to find answers. There are a lot of people who think CFS & FM are close if not the same thing but they are not. CFS is now thought to possiblely be an autoimmune disease, the latest research is going in that direction. Also, there is quite a bit of interest in mitochondrial research. After reading about this I started taking Co Q10. Our mitochondria make a lot less of this then normal mitochondria. I do think I have notice a bit more energy from this.

I take magnesium malate it seems to help with energy, memory & cognative issues.

As far as holding down a job only you can answer that. If you can, that is great & just keep on with it. If I could I would, I loved to work. I don't think working can make CFS worse, it is what it is, mine has not gotten any worse or any better. Sorry to say that but I have gotten used to my life as it is. I try not to get too down because of it. So, keep working, spend your energy on your family, I do I live with my daughter & two garandchildren. Everything else do as you have the energy for. My daughter is also ill so we do things like cook once, eat twice or maybe three times. Empty the dishwasher as soon as it is done so it is ready for dishes. We make one big salad per week, ect. just to name a few.

I hope this helps some. Take care of yourself & come back often. Gentle husgs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

m9ven
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/19/2013 12:48 AM (GMT -7)   
I really pray for you all the symptoms you describe are very similar to what I'm going through too.

beautyofthesea
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 7/23/2013 4:14 AM (GMT -7)   
I would like to give my input in this matter as well. I suffer from fibromyalgia and cfs as well as a long list of disorders. If you are already having issues with fatigue and disturbed sleep, working even part time would not be in your best interest. You really need to focus on your health and on taking care of you which I know can be very hard to do because you are so used to being the caregiver for your family. But if you push yourself too much your health will suffer more. And you'll have flare ups more often. Sure you can have good days where you'll want to do more but ultimately this is the worst you can do for a body already stressed from the fibromyalgia. Plus keep in mind that you have two very active kids that rely on you for everything. If you are to tired or hurting to much to give those kids what they need you'll suffer from depression because your caregiver role is now lacking and it will also lead to flare ups. That's why it is so important that you take really good care of yourself.

It doesn't matter if you also have cfs. The treatment for medication is just about the same. Best of luck and welcome to this forum.

kayla33
Regular Member


Date Joined Jul 2013
Total Posts : 86
   Posted 7/23/2013 3:33 PM (GMT -7)   
While everyone's body and illness is unique and different, for me, working only made my symptoms worse and I deteriorated even more.

I can suggest a saliva cortisol and hormone test. The cortisol part has a play in fatigue and how your adrenal glands are going.

Thyroid panel and have it interpreted by a naturopath who will also order the saliva cortisol tests.

Vitamin D levels need to be on the upper end of the ranges. Google about Vit D and the immune system and how it is essential for our daily functioning. Dr Mercola's website is a good starting point.

Remember that "normal reference ranges" can infact be "not so normal" and have an impact on the individual. A good naturopath will help with interpreting test results and ordering the correct ones.

Heavy metals, leaky gut, and bacteria etc should all be tested for, identified, and treated. Same goes for identifying food allergies via lab testing.

Lyme disease and coinfections is another area to look into once all the above are checked out and being treated.

The above is of course just a starting point for tests and researching.

Do as many and much as possible to help identify any causes that can be treated and eliminated or controlled. Then see how you are doing. Process of elimination. Never stop searching for answers. It's better than not testing and having to live with symptoms and issues that could have been identified and relief provided.

All the best with your journey to good health.
Newly registered contributer/member, but long time lurker/reader.

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/25/2013 12:34 PM (GMT -7)   
thanks Kayla

I have decided to go back on sick leave from work and then drop my days from 4 days to 2 days a week and see how I go with that.

Vitamin D was very high, over 100 so I think thats ok, i have just joined a specialist clinic here in the UK for ME/CFS...they are going to do adrenal testing on me and recommend the best supplements and diet. My thyroid was also normal, but was nearer to the hyper end than hypo end.

I have never considered Lyme Disease...not sure how you ask for this in the UK?
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

kayla33
Regular Member


Date Joined Jul 2013
Total Posts : 86
   Posted 7/26/2013 9:31 AM (GMT -7)   
I'm not in the UK so will leave that question for others.

Work as little as you can, from a financial perspective, and see how you feel physically and if there's any improvements etc.

That's great about the adrenals. They are a major cause for so many.

Keep digging for answers, while at the same time resting so that you can focus more on your body and lower all stress.
/
Newly registered contributer/member, but long time lurker/reader.
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