Can you have both Fibromyalgia & CFS??

Posted , 7 users are following.

Evening.

I have fibromyalgia but im also wondering if I could have Chronic fatigue syndrome..

The specialist at hospital as said I have 18/18 tender points and also have it in my chest. Been rushed to a&e with bad chest pain.

Im in alot of pain take a mixture of meds.

I have a terrible memory and as for sleep. Ive not had a full nights sleeps for knocking on a year now.

Sometimes I have to lay down in a dark quite room.

Where there is no noise and n bright lights. I also have headaches everday .

If I walk to my local shop a 2 minute walk by the time I get back I feel like ive run a marathon.

I have to have a nap everyday.

Driving is becoming a problem too a drive to dr's 6 minute drive wipes me out.

Anyone else with fibro feel like this.

Thanks for reading P x

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15 Replies

  • Posted

    Hi Paula, the answer is yes you can. I have both fibro and cfs/me and all you have written about I suffer with too - plus severe joint and muscle pains and short term memory problems. I also have hypothyroidism, osteoarthritis, high BP and cholesterol and spondylosis. Sometimes I find it hard to get out of bed and get dressed. Sending gentle hugs - btw my name is Paula too xx
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    • Posted

      Hi Paula. Well goodness me. Another Paula with the same symptoms.

      Same here getting up in a morning is such a task. Im with my OT this week so will have a word about it.

      Iwas told in December last year that I have fibro but they think I could of had it for years.

      How do you cope with it because I will admit im not coping at all. The pain is 24/7. Its taken over me.

      Alot of friends dont bother with me anymore due to me breaking plans we made.

      Sorry for going on

      Gentle hugs to you too sweet. Px

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  • Posted

    I understand completely how you feel. Apart from the headaches I have the same problems.. The fatigue is so hard to cope with. Get up, get dressed take a nap to have the energy to go downstairs for breakfast. Go to the shops if I can, but really count my steps on the return journey to will myself to get home before I fall asleep in the street. Another nap. This is my life now everyday. I just can't stay awake for more than a few hours. When I try I become unstable on my legs and stumble all over the place, so now I don't even try. When the urge to lie down is strong I lie down. Even 30 minutes sleep gives me enough energy to carry on People who don't have extreme fatigue must find this hard to understand, and think we make excuses not to do things we have always been able to do until recently. I have also been rushed to hospital with suspected heart attack or pulmonary embolism (which I had 3 times in the past) Severe chest pain is very frightening, because it doesn't seem to have a link with fibromalgia. I had the pressure point test, but not all of my points were very painful although I screamed with pain with the last one the specialist tested. She was really upset and didn't even test the others because she said I had fibromalgia and she didn't need more proof. My memory is poor now also. I was afraid I was getting Altzheimer's. I get off the bus sometimes and have to really concentrate to remember the way to my house. I have lived here for 15 years and it is only 400 metres from my home but I look around the street and feel real panic, it's as though I have never seen the town before. This doesn't happen all of the time, and it's the worst problem I have had with my memory. But I really have to search for the words I need to express myself, even simple phrases can be difficult some days, and as for remembering where I have put things, that is a constant waste of time and energy. I got a notebook to make a note of where I put important items, but I forget to write in it, or I forget to refer to it when something is lost. I thought of starting to drive when walking became too difficult, so I bought a car, but I don't have the energy to drive it and I am sure I would be a danger to others as I am constantly exhausted, and so won't be sufficiently alert. And now I have read your experience I realise that driving can also be very difficult with this illness even for someone who is an experienced driver, and it's several years since I have driven. The specialist I see said that chronic fatigue is a symptom of fibromalgia, but I had no idea how bad it could become. I have another appointment next month so I will be asking for tips to cope with that, and the loss of memory. What do you take for the pain? Do you think it could make the tiredness worse? I worry about that, but I can't live with the terrible pain in every inch of my body like I had before. Take care 

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    • Posted

      Hi sweet.

      I don't drive everyday. I rest for a day or two if I have to go out. I have appointment this wednesday with my OT. So I will rest today and tomorrow. I only go out in the morning's as Im ready for meds at lunch time. Even though Im allowed to drive with my meds. I don't. Hospital appointments are always in morning too.

      Fibro fog is a nightmare like yourself I have to write notes as to what I need to do.

      I take Tramadol slow release. Pregablin. Sertraline. Paracetamol. Amytriptyline. Calcium&D3. Omeprazole.

      I was put on Amytriptyline to help with sleep but not a chance. And I can't have more than 30mg due to Sertraline. Im on high dose of that too.

      I was also taking Ibuprofen but I was rushed to hospital with server stomach pain. And told never to take it. I was on it for over 20 years and just had a bad reaction with it oneday.

      I was put on morphine patches. But the side effects was very bad & then I was told I was a high risk of side effects so they took me off it.

      You would think that with all those meds I wouldn't get headaches. But every morning its there.

      I wrote everything down pain wise and what I can and cannot do. Then showed specalist at hospital. He was great I wasn't aware but he was watching the way I was walking too. Because my hips are bad. At the end of appointment he told me my action plan, gave me lots of booklets to read and also said to join a support group as he said it would help.

      I have had to re-educate myself. And still alot to learn about fibro.

      Gentle hugs sweet. Px

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    • Posted

      Hi Julia. Poor sweetie! Yes it can be a real battle at times. You are so courageous. People who do not suffer from these chronic conditions cannot really comprehend the struggle. I have CFS as well for many many years. I too pace myself and recognise my limitations although it is frustrating at times. I have noticed a bit of a difference since I incorporated some green healthy smoothies. I love my NutriBullet! Many healthy recipes can be added. It gives me the boost of vitamins and nutrients I need. My Brain Fog does not seem as significant then, but I do use many sticky notes. If I don't write things down soon enough, I am bound to forget. I have trouble with people's names and I often search for words in a conversation. We do the best we can considering heh Julia?  Plus, making sure that I get to bed at a reasonable time and getting enough sleep is crucial. Managing stress is a very important factor as well because we do not cope well with stressful situations. No wonder! I think we have all had too much of our fair share. We are all in this together my dear! You are never alone in your struggles. Proud of your efforts sweetie! Maggie xx

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    • Posted

      I see what you mean about your medications. You take a fair cocktail, but still get head-aches. I get toothache almost constantly, but my dentist insists there is nothing wrong with my teeth. I asked my doctor what I could do for the pain he said with my medication Oxycontin I should not be feeling pain, and when I said that yes I do still feel pain his reply was "Well you would feel more pain if you didn't have the Oxycontin" which is obvious but not very helpful. I took Tramadol for several years and did find it helpful, I just felt the dose was not high enough, but my doctor refused to increase it and put me on morphine instead. I also had Omeprazole, but I find Gaviscon works better for me I can't take parecetemol and Ibobrufen gives me terrible stomach pain almost immediately. I feel very sorry for you with head-aches every day. I am lucky; apart from rarely, my head is the only part of me that is pain-free. But when I was younger I had migraines that lasted three or four days, so I know what it is like. The specialist at the hospital gave me amitriptyline and told me to take five drops and increase it to 25 drops as I had not been able to sleep due to the pain for over a year. I took five drops and could not even wake up properly the next day so I never took another dose. I sleep better now that I have less pain, still not for more than about 3 hours at a time, but when I wake up I am not contorted with pain like before. It used to take several minutes before I could move, I seemed to be frozen and in agony. Now the only part of me that has that problem is my hands, my right hand especially is totally unresponsive and twisted like the hand of someone with cerebral palsy when I wake up, but normally it passes after a few minutes, but sometimes it can take 20 minutes before I can use it. That used to frighten me because I thought I would end up paralysed but now I think it's just another facet of fibromalgia. I never knew that illnesses existed that could cause so many different problems at the same time. Like most people I know I had never heard of fibromalgia until fairly recently. Your specialist sounds great. He gave you booklets to read, and I am sure that helped. I went into a big bookstore and asked if they had anything on fibromalgia. I thought the illness must be rare as I had never heard of it. He had a huge selection of books on the subject and I bought three which I found very helpful. It was such a relief to see all of my symptoms listed and to realize that it wasn't my imagination, and to read other people's experiences and tips on coping. I don't know of a support group, but I find this forum is a great help. And I am grateful to everyone who takes the time to explain their symptoms and the treatments they find useful. Like you I've still got a lot to learn about this illness which seems to produce a new problem almost as soon as I have got my head around the last one! Take care

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    • Posted

      Thank you Maggie for your encouragement. It means a lot to me. I know that stress makes me feel a lot worse, so I try to avoid it, especially as I am allergic to adrenalin, and have had several very severe reactions to it. The last time I had anaphylactic shock which presented a huge problem because the usual treatment for that is an injection of adrenaline! I was lucky I was at the hospital and had just explained that I was allergic to adrenalin before I collapsed. Every time I try to do just a bit more when I am really tired I remember that you said a while ago that it is important to accept my limitations, and I know it was very good advice. When I do too much I have two days when I can barely get out of bed, so it is very counter-productive to try to accomplish more than I am capable of now. It is very frustrating because I have always been a workaholic and find inactivite impossible to bear. I have started stamp collecting to occupy me when I am too tired to move, and bought several books of enigmas to try to get my brain working properly again. When I was young I was a member of MENSA, so now I find it very hard to feel as though my brain is giving up. I always cook from scratch, never eat pre-prepared foods or things out of cans or frozen ready meals, so I try to eat healthily, but my appetite is very poor, and I find it very hard to find something really tempting to eat or drink. I know you swear by smoothies which I have never tried. Perhaps they would give my appetite a boost. I am a good cook, so it in't as though my meals are boring, everyone who eats with me is impressed, it's just me that find everything uninspiring at the moment. Thank you again Maggie for your good advice and kindness to everyone. I know that I for one am very sensitive now and really appreciate a few kind words when everything seems so difficult to bear. Julia

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    • Posted

      Well sweetie, since you say that you were a workaholic, it is evident that you have been very demanding of yourself over the years.  Hard on yourself in other words. Obviously you have done more than your fair share. So now is the time to have more balance Julia. You need to take better care of You! We are no good to anyone or to ourselves when we overextend our limits. I know that it is hard to re-evaluate and adjust our priorities but it is absolutely crucial to managing this condition. Sometimes it is good to look back to find the 'why' we are so hard on ourselves. Why we never feel deserving or satisfied and proud of what we have accomplished, instead of still placing irrealistic expectations on ourselves. Usually something or someone in our past made us feel that we were never 'enough'. Please start to believe in your worth Julia. You don't have to be superwoman to be loved and appreciated. Be gentle with yourself both physically and emotionally, as you would someone you value and love. xx

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  • Posted

    Yes, yes, yes Paula, most of us have CFS too plus other autoimmune issues..be blessed Paula have a lively day💐😘😘💐

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  • Posted

    Yes, I recently posted the same question, and doctors advised me that they are both so similar that you can have a mixture of both. It's like a minefield xxxx

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  • Posted

    He everyone. Thank you for all your kind words.

    I have been to hospitalthis morning and yes I have CFS.

    So heres to learning what my body tells me.

    Thanks again everyone gentle hugs to all Px

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