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Does anyone else with Fibromyalgia get any of these symptoms??

Posted , 111 users are following.

princessemh89
princessemh89

My GP says he's pretty sure I have fibromyalgia after going back and forth to him with different symptoms for almost a year. I now have an appointment at the hospital in early December with a rheumatologist to discuss the symptoms further, have a full examination and hopefully receive a diagnosis.

Over the last few months my symptoms have gotten worse and more diverse and I can barely stand it anymore. I constantly feel tired no matter how much sleep I get and the minute I do anything like make a meal or go shopping I feel exhausted and have to rest. I get what my doctor says is tension headaches all the time and feel as though I am allergic to everything! My nose, ears and throat constantly itch (sometimes unbearably) and and I'm always sneezing. I always feel as though I am about to get a sore throat and ear ache and then it goes away. I have chest pains that feel like I'm having a heart attack and I get stabbing pains that feel as though they are underneath my ribs. My back constantly aches but when I try to sit or lye comfortably I get stabbing pains and can barely sleep in the early hours. My ankles feel as though they are sprained even though I haven't done anything to them. I bruise so easily and the slightest touch feels so painful. Even running a finger over my skin sometimes feels as though I have sunburn or something similar. My arms and hands and legs and feet go numb all the time and sometimes I get what feels like hot pin pricks in them. When I walk sometimes or am lay down I get shooting pains down my legs. My Doctor says I have IBS and I spend all my time either constipated or with diarrhea and horrible stomach cramps.

I feel like I am going insane and I can't cope. I'm quite sure I sound like a hypochondriac but I really do experience these symptoms on a daily basis. Am I alone in this or do other people with Fibromyalgia have these troubles?

I am on anti inflammatory tablets(pregabalin after gabapentin wasn't working) but they barely do anything. How can I live like this for the rest of my life?

I have had many blood tests to rule out any other defficiences etc.

14 likes, 159 replies

159 Replies

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  • anthony00827
    anthony00827 princessemh89

    Posted

    Hi every one just found this site and I dont really know where to start lets get it clear you arent going insane unless you have had this crazy so called illness you will not be able to understand the phyical and mental toll that it causes by turning your life into a constant battle trying to explain the symptoms to loved ones any number of doctors having endless tests and scans so many different drugs and potions that just dont work I to have most of the symptoms that you have listed the chest pain is the most worrying not knowing if you are havng a heart attack or another costo fibro attack by the way I am a 50 year old male and all of these problems started about 5 years ago I have now started looking at wheather it is a build up of no getting enough sleep over a number of years and the body just doesnt heal it self anyway sorry I have not answers just in a strange way its good to know Im not the only one slowly gooding nuts with the pain ps latest research is that our serotonin and doponine level are not right so we feel pain because of chemical inbalances sorry for the spelling brain fog this morning tony from oz.  
    • barbara14024
      barbara14024 anthony00827

      Posted

      Tony my heart frlt sympathy and yes the brain fog makes you feel like you may have "lost it" That really interfered with my work. Now after over 25 years and no better with more soft tissue pain everywhere just about and new pain in my feet . Nerve pain blurry vision chest infections pain with a burning sensation that I wrap myself in cool damp towels some nights The creeping crud I call it as leaves one area to go to another always starts on the left side. Yes seratonin and endorphins, dopamines do feel more will be learnt over time .. immuologists will probaly find out more. We need not more meds as never found mych helped me Still have sleep problems and fatigue. As a child often had some of these symptoms but was too busy all my life but has progressed to where its goodbye tennis and skiing. I too live in Oz Qld.

  • bbanks91
    bbanks91 princessemh89

    Posted

    I promise your not going crazy. I'm 23 years old and it took the doctors 2 1/2 years to figure out what was wrong with me. I have all symptoms you just named off. It's horrible. I feel useless. It's hard to do everyday tasks. It's hard to get out of bed. I never understood what was wrong with me, why at 20 years old I couldn't do what other people were doing and I'm constantly in pain. I'm prescribed somas, tramadol, Norco, gabapentin, xanax, buspar, clariton, ibuprofen, zofran. I hate it. I can't live a normal life really. It truly takes some getting used to. It sounds scary but it's not a scary health issue. It just sucks and hurts. Since 20 years old I've had trouble getting out of bed. I look like death, support skinny, bruise easy, shaky from pain, weakness in my bones, the cold hurts and the heat makes me swear and feel like I'm going to pass out all the time. My boyfriend makes me food, helps me stand up and takes care of our 3 month old. I feel like I'm dying half the time and it depresses me to look at my child and know I can't play with her like I truly want to. I know there's people out there with worse problems but at times it feels like death is a better option when you need someone to do everything for you. I'm still struggling to get used to it. I wish you the best of luck and keep your head up even on the worst days. It doesn't get better so it depends on what we make of the situation. 
    • Pollybambi
      Pollybambi bbanks91

      Posted

      I was diagnosed with polymyalgia 20 years ago when I was fifteen after a horrible car accident where I broke my back in two places I had to learn how to walk again and I thought I was in the clear but then the symptoms started just like yours and I felt like my life was over I am currently 35 I've been diagnosed with MS then that diagnosis was changed to NMO which most people do not know what that is basically my immune system is attacking me and it has paralyzed my right leg I am losing my sight along with my hearing and other motor functions I am constantly at the doctors and they are still finding new things wrong with me. Due to the fact once you have one autoimmune disease you are more likely to get additional ones. A year ago I was hospitalized twice with in a month, the first day I was in the hospital for a week the second one I was in there for two and a half weeks, and now I am permanently in a wheelchair, because the doctors and Hospital did not give me the proper treatment at the proper time I now have a permanent disability! I have 2 kids and my husband and my children have to take care of me I need help to get out of bed, to take a shower to do any basic needs my daughter or husband cook my son and daughter have to clean I want them just to be kids, besides not being able to move I am in constant extreme pain and I am on a lot of high-dose pain pills, patches, muscle relaxants, nerve blockers, I also have to go into the hospital once a month and get IV infusion to kill my immune system and to take down the inflammation that is in my body which then that makes me extremely sick and adds to my horrible migraines that I have. I also have autonomic dysreflexia where I can not control my blood pressure which is normally high average of 180/ 110 which that is putting constant stress on my heart then I will not control my body temperature which does not bode well with having polymyalgia with the heat making me feel nauseous with a cold making me hurt but then my body will decide to become extremely hot or extremely cold so the pain and the nausea headaches and the shaking never stop and yet the pain is still unbearable I lay in bed with tears running down my face sometimes wishing for it all to just end as I'm writing this right now my legs feel like they are on fire it's truly not fair but the thing is that we have to be stronger then the normal person even though we cannot do the things we once did and we're not strong and we're in constant pain and our minds might not work as good as it used to we all have our role to play I am a wife I'm a mother and I just do my job differently now I can still help my kids with their everyday problems I can still be a teacher to them I can still be there for my husband to give love and support even though I feel at times like I am Burden when my husband has to do everything for me but I know that he loves me and my kids love me too and they are the reasons why we have to keep fighting why I just can't give up why I have to try to mask the pain even though even though I fail a lot jn that aspect because the pain is just so great .

      Just because the doctors gave you diagnosis I fibromyalgia it does not mean you don't have something else I was told for many years I only had polymyalgia and then after 5/6 years I was told I had a MS along with the fibro but it turned out that was also wrong so please never quit fighting never give up on yourself and your own personal wonderful Journey even though your journey is lined with pain and discomfort you also have seems a loving boyfriend and a little baby that needs you more than you can ever know you will just Be a mom in a different way and that's okay

    • barbara14024
      barbara14024 bbanks91

      Posted

      My heart breaks for you and I cried reading your letter. Please know we all feel as you do .. i often say there are thosez suffering worse than me and yet I too wish I could just lie down and quietly die but it doesnt happen. Please try alternatives to all those meds. Lots of Magnesdium powder form is best and Tumeric cucurim helps. Ask your partner to help you into a warm bath with lots of Epsom salts sit on a towel in the tub. He will have to help you out. Get him to gently sponge you with the water and pour oit over you gently.. please also look for a Dr on site who can help with Guaifenisen not sure of the spelling but it is in a lot of cough syrups but see if you can get it as helped me for 3 years then I couldnt afford it anymore. Took time and it all came back unfortunately. But was pain free for awhile. FM really doesnt do well with many of those meds. DRs just prescribe hoping they will help. The side affects on top of the FM makes things worse... please keep reading and praying for a cure as you are so young to be suffering so much. Yes the seatonin levels dopamines and endorphins play a role so get silly funny DVDs to watch and laugh a lot even at a fly on the wall and later try really loving intimate moments as I have read that having a climax helps. I am a 71 years young woman and feel anything is worth it if it can help pain. I just care for you and hope soon help will be there for you. Bless your partner few men are as caring.

  • victoria63790
    victoria63790 princessemh89

    Posted

    Hi..I got diagnosed with fibromialgia/ME about 2 years ago now after having various ailments and going backwards anf forwards to the doctors. Since then I have had one problem after another.  I.never feel ok and I feel like nobody understands my problem.  I have 3 girls and a boyfriend and I am just constantly on the go even though I just want to sit down and relax...and as for sleep im constantly tired and if im not tired then I have problems sleeping even though my body is shattered!! 

    I am quite lonely. Does anyone else feel this? 

    • vickylou81
      vickylou81 victoria63790

      Posted

      by about midday I feel totally exhaused even if I have done very little. I have a 5 year old son and husband and I feel so bad that I just can't do some of the thing I was doing 6 months ago with them. I used to take my son on walks for hours now my knees/calfs hurt walking up the stairs sad

      My sleep is also really disturbed, I can fall asleep but wake alot in the night. The worst thing is other people cant see your symptoms so don't think you are unwell.

       

    • bobsgirlz
      bobsgirlz victoria63790

      Posted

      yes i feel the same , plugging away , i work full time and when i get home a lot of days i go straight to bed ! my girls are 19 and almost 17 so its really the 17 that needs me most for rides and things as the 19 year old drives and works , but some days its toooooo much even though they are very self sufficient 
  • diane47116
    diane47116 princessemh89

    Posted

    I just saw my rheumatologist about this.  Its called costcochondritis.  He told me when I have these pains, treat it as a heart attack because there is no way to tell the difference.  I had my first episode several months ago.  And have had several since them.  The important thing is to have your heart checked to make sure that its ok.  I was given nitroglycerine to help with the pain.
  • vickylou81
    vickylou81 princessemh89

    Posted

    I get lots of symptoms too, it seems like something new appear every week. I take naproxen morning and night and these help with the pain in my hands and knees. I know if I ever forget to take them but they don't help with the rest of the Fibro symptoms.
  • charlene6774
    charlene6774 princessemh89

    Posted

    I have had fibro for 13 years. My Dr. has me on Lyrica and Savella twice a day. They work very well together, however there are still good days and bad. Fortunately there are more good then bad. In the past 5 years I have had 2 angina attacks which felt like my chest was going to explode. Currently  l have been getting stabbing pains in my chest on the left side. These pains don't ever last long, but they come and go while resting and moving around. These pains are from my fibro, as my fibro effects my upper body, thighs and my ankles and feet. Hang in there everyone and ask your doctors about Lyrica and Savella as I never hear of anyone else taking these meds.
  • margie66528
    margie66528 princessemh89

    Posted

    Hi, so sorry to hear of your struggle. I am from the US and I have had all the same symptoms since 1995 after having a severe lung infection that went undiagnosed for  six months, I have not been "normal" since. I have seen all kinds of doctors and a rheumatologist had been helpful, but I just recently found a top neurologist that is treating the fibro with a nerve med instead of muscle relaxers or pain pills. Not sure if you have Lamictal in the UK but it is known as the miracle drug. It helped alot to reduce pain. Apparently, FMS is a nervous system disorder of some sort and it helps with the nerve  transmiters in the brain. I am hoping to get info out everywhere I can so people know there are other options instead of getting hooked on pain meds. There is an exceptional book that will answer all your questions, plus more. The name is "Fibromyalgia & Chronic Myofascial Pain & Survival Manual" by Devin Starlanyl and Mary Ellen Copeland. It's been a while since you posted this question, so I hope you see this. If so, I would be interested to know how you are making out. God Speed.
  • aatif18227
    aatif18227 princessemh89

    Posted

    Hey...i have exactly the same feelings...additionally i always dream like i am dying such as i am driving car on high speed and roads ends etc...

    Can you please tell me how you have resolved this problem. Honestly i m tired of this life...no doctor can und ...everyone says u r perfectly fine..

    Waiting for your response

  • bluesman
    bluesman princessemh89

    Posted

    Interesting discussion. I was 'diagnosed' with fibromyalgia in 2013 but have had the symptoms for years. I haven't found my doctor's advice much good. He prescribed Paroxetine, an anti depressant which was great at killing the pain but had horrendous side effects (look them up - I had most of them including weight gain). I wasn't and am not depressed in any case. I have now come off this drug and can offer tips which have been successful in my case. The most beneficial thing I have done is to take calcium and magnesium. I take the Boots one but instead of the recommended two capsules a day I take two in the morning and two at night. I understand that if you overdose on magnesium your body will respond by you having diarhoea. Therefore take the recommended dose but see how much your body will take. Magnesium deficiency is very very common amongst fibro sufferers. Since taking magnesium my pain and stiffness has reduced to the level it was on the Paroxetene but with none of the side effects. Other things I would recommend: take a 1cm cube of fresh root ginger per day. This helps with the pain too and will help digestive problems. Exercise as much as possible and for sleep try valerian tablets, . Also I have found that listening to guided meditation and sleep recordings is good as welll as essential oil lavender or orange blossom. I can usually manage the pain now without pain killers but when I need something I take Naproxen prescribed at my request from my doctor on a recommendation from another fibro patient. I'm not quite sure why a posting about cannabis has been deleted but I do know that the drug Sativex, generally prescribed for MS has had successful trials for fibro. It is a cannabinoid. I understand that doctors are in a difficult position to prescribe this yet because the licence is for MS and cancer pain but I have been told by someone who did manage to get a prescription that it has worked in their case.

    I have posted a version of the above with links which has gone to moderation. I posted this version in case the links were deemed to be advertising.

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