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I'm so confused? Any advice/ help support would be appreciated

Posted , 6 users are following.

victoria_59764
victoria_59764

Hello. I'm a 34 yr old mum of two. I've joined this site for advice due to a diagnosis of complex cysts on my ovary. This was diagnosed through an MRI for a slipped disc in my back. Anyway......... Over the last week or two I've been experiencing flu like symptoms. I feel like every part of my body hurts ( morning is the hardest time. I can barely put one foot in front of the other). I'm going freezing cold to boiling hot and sweating. I have an area on my leg which is agony to touch and numb ( I thought that may be the disc). My arms and legs twitch as I'm layed in bed. I've got very little energy and the most basic tasks I'm finding a huge stress on my body. I feel exhausted even when I've slept and I'm so tearful and emotional. It's taking every effort to try to get on as normal eg get up in the morning, get washed, dressed and go about my day ( I work as a carer but not yet returned to work after disc and news of possible cancer on my ovary).

Anyway I got so desperately upset two days ago. I was in so much pain all over. I started to do my research and found this condition. As I read more into it I soon discovered that nearly every symptom was like what I'm experiencing. I'm beginning to wonder if I've suffered with this for yrs.

I started to think back and for yrs and yrs I've suffered with tension headaches, depression, IBS and abdominal pains. I had meningitis when I was 18. My husband had an affair and left me. I nearly lost my youngest daughter to a rare lung condition. Could any of these traumas have caused this???

Over the last few weeks I've been going to the GP. Not once has this condition been mentioned. I'm just prescribed pain relief and told I have a lot to worry about at the moment!!

I'm in such a state. I just want to feel well again!! I'm doing an access to nursing course and due to begin uni in September, but I'm beginning to think my dream of becoming a nurse is going to be short lived if I feel like this. Im also due to be maid of honour at my sisters wedding in July. I'm so scared that if I still feel like this I'm going to let my sister down.

I'm sorry for such a long account but I'd really like to know your take on this... Could this be fibromyalgia and the answer to why I've been unwell on and off for yrs??

Many thanks to you for taking the time to read this.

Best wishes

Vicky xx

0 likes, 21 replies

21 Replies

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  • Misssy2
    Misssy2 victoria_59764

    Posted

    Sounds a little deeper than Fibro...you may have Fibro additionally, but you really need your Dr. to start doing blood work to rule out other things...such as thyroid...lupus, lyme.., sjorens, rheumatoid arthritis.(those were the ones they ruled out first for me). 

    ​When all those came back negative they chaulked the pain part of my disabilities to Fibro..and the mental to Borderline Personality Disorder.

    • victoria_59764
      victoria_59764 Misssy2

      Posted

      Thank you very much for your reply.

      I've never heard of borderline personality disorder! I'm very sorry you've been through a tough time too. My bloods are being checked for tumor markers on 25th and doc has now said she wants to check other things like thyroid now.

      I just can't explain how much I'm struggling with life at the moment ( I'm normally on the go, none stop, cleanaholic, eager to complete assignments, not really sitting down until the eve). At the moment I dread any task big or small. I tried to just get on, on Friday! I walked the dog round to my sisters then we went for a cuppa to a friends to discuss wedding! By the time I got home I just needed to lie down. My limbs felt so heavy and painful, my head was pounding and I was boiling hot and sweating but had goosebumps and was freezing!

      Anyway sorry to go on and thanks again so much for taking the time to reply.

      Best wishes

      Vic

  • tiggers1
    tiggers1 victoria_59764

    Posted

    Hi first of all I'd like to say how sorry I am for what your going through . And all the ups and downs you've had over the years . I'm not a dr but From what you've described there it sounds very much like fibromyalgia . I would go to your GP and mention it to them and se what they think this condition always gets over looked as it being in the patients head but as you well know it's not and it's such a struggle every day . Like you I was dignosed with bulging discs in my neck and lumbar part of my spine i also got told i have degenative disc disease over the years suffered pain all my body and numbness and pins and needles in my legs feet and hands I also get hand tremors headaches ect I then got dignosed with IBS . After I got dignosed with fibro . So i know how you must feel . Try to take each day as it comes and don't over do things . But definitely go see your dr and speak to him about it . Hope things get better warm hugs x
    • victoria_59764
      victoria_59764 tiggers1

      Posted

      Ahh your message made me cry! Thank you so much for your help and advice!

      I'm having bloods checked for c125 markers on 25th and the doctor has also added to check thyroid and other things now.

      When I mentioned to the doctor ( when I had a telephone appt) on Friday, that I'd read up on fibromyalgia, the doc said that it's such a complex thing to diagnose and to discuss it with a doctor that knows me. Seriously when I book an appt I never see the same doc everytime sad. I'm just worried they're thinking ' oh no here's miss Munday again': what next?

      It's all just getting too much lately.

      Sorry to hear of your suffering with fibromyalgia. Can I ask? Do you have it under control and how has it affected your life? Do you have regular flare ups??

      So would you say that I'm on the right lines with these symptoms?

      Thank you so very much for taking the time to reply. Really means a lot.

      Best wishes

      Vicky

  • debbie68552
    debbie68552 victoria_59764

    Posted

    You sound like you have been through a lot of turmoil and fibromyalgia can be worse when stressed.  There is no blood test for fibro, and they diagnose it by adding up the symptoms.  If you have a lot of the trigger points for pain and some other symptoms then they rule out arthritis etc. first.  Your cysts are probably stressing you out as well, although cysts are common and usually not cancer, you worry. In the meantime, if you think you might have fibromyalgia try to get lots of rest, eat healthy, pace yourself, epsom baths, massage, whatever it takes to get well. Walking helps, even 5 min ones.   It seems to be all about balance.  Try not to worry about the cysts if you can.  If they are cancerous it sounds like you caught them early because of the mri.  Take it one day at a time.  Hope you feel more in control.  As for your sisters wedding, think if your roles were reversed, you would just want her to take care of herself.  Your sister would feel that way too.  Hope I said something that helps. smile
    • victoria_59764
      victoria_59764 debbie68552

      Posted

      Thank you so very much for your lovely reply. You've been very helpful yes.

      Can I ask do you suffer from fibromyalgia? You know lots about it.... Fantastic help!

      I've just woken up after a restless night and my whole body is literally aching and tingling in places. I also twitch! My legs or arms will all of a sudden judder and make me jump. I'm also very itchy!

      Everyday I am trying to go on as normal. I saw the doctor on wed and she advised me to stop taking two of my pain killers to see if it stopped the sweating. She's also said about blood tests on the 25th. Anyway by Friday I was in the worst pain. After walking the dog to the shop with my daughter I got home and had to lay down. Then it was near impossible to get up again 😢 I called the doctor in a state and all I could have was a telephone appointment. She told me to get straight back on the pain killers. I told her about fib and she just said its a very complex thing to diagnose. She almost sounded like I was being completely ott.

      I'm just so so frustrated. I'm so scared if this is how I'm going to feel long term!

      In your opinion do you think that it is fib?

      Sorry for droning on again. It's just so nice to off load to people that understand me.

      Thank you so much

      Best wishes

      Vicky

    • debbie68552
      debbie68552 victoria_59764

      Posted

      Hi Vicky,  Yes, I have fibro and you have a lot of the same symptoms, but the dr. has to rule out everything similiar first before he or she will give you a diagnosis.  Thyroid  causes itching too, and all the other symptoms, so you have to hurry up and wait for the dr. to figure it all out. I know it is hard to wait, especially when you hurt so much. Fibromyalgia has not been an official disease for very long.  Most people were told it was all in their head and there was no such thing.  Some people think fibro and cronic fatigue syndrome are one and the same.  For me, I think the fatigue is my worse symptom most of the time.  The soreness comes more when I overdo it, and it doesn't take much so I am very careful and don't make plans to far into the future. I did read that yoga is wonderful for fibro.  I have never tried it and did water exercises instead.  Once your dr. gets the results of your blood tests she will have a better idea of how to help you. Oh and stress makes your pain worse, so try and be calm ok. smile  Fibromyalgia can go into remission.  It sounds like you are having a flare up which is what we try to avoid. That is why it is so important to not over do it and pace yourself.  Hope you get answeres soon!
    • victoria_59764
      victoria_59764 debbie68552

      Posted

      Thanks again for your reply. I've spoken to doc today who is reluctant to make any rash decisions with regards to fibromyalgia until I have had the results to ongoing cyst trouble ( appointments and scan next week) and been reviewed by the pelvic pain clinic in June.

      She is going to take bloods on the 25th to check my thyroid and other bits.

      So basically I need to cross each bridge when they arise for now. She was very nice and explained that with all the other difficulties I've got going on, she wouldn't want fibromyalgia to be diagnosed and all the other issues to be swept under the carpet: it did kind of make sense! In the meantime I guess I try not to worry and over think things. I'm extremely worried about my second visit to the cancer clinic next week but realise I need to know what they plan to do next!!

      Do you take pain relief at all? Was just wondering what you take?

      Once again you've been a real help. So nice to speak to people who understand what I'm feeling.

      Best wishes

      Vicky xxxx

    • debbie68552
      debbie68552 victoria_59764

      Posted

      Hi Vicki,  I take cymbalta which is an antidepressant and is good for nerve pain.  It helps the pain for me, but right now, I am more bothered by the fatigue.  If I take another pill, I think I may sleep my life away! Pelvic pain could be that ovary acting up, so it is good to get it figured out and taken care of first.  Cancer is always scary, but they can do so much for it now a diagnosis of cancer doesn't mean you are dead.  I know it is hard, but just take this journey one day at a time.  I wish I could be of more help, but if you have fibromyalgia it is finding the right medication, and making lifestyle changes.  Some take lyrica for pain, but I don't know much about that medication.  Pinterest has lots of information too if you type in fibromyalgia or whatever you are looking for. It is so hard waiting for answers, hang in there! Debbie
    • victoria_59764
      victoria_59764 debbie68552

      Posted

      Thanks Debbie I really appreciate your advice. I'm already on antidepressants and have been for many yrs but I'm sure probably the wrong ones to help me with these symptoms.

      The pain killers I'm on knock me out completely so I know what you mean.

      Yes il be very glad when I know where I'm at with the cyst. It's hanging over me like a brick. It's the not knowing!! The consultant I saw said the pains I'm having in that area are nothing to do with the cyst. I'm not so sure as much of the pain is on the right where the cyst is.

      I returned to college yesterday after 6 weeks ( ironically I'm doing an access to nursing course) of which I've decided that no matter what happens I will see through to the end. As for beginning my university journey I just don't know if it can happen now based on how I'm feeling at the moment. Anyway I left college early yesterday as the pain of just sitting was too much. I intended to return home to lay down but I decided to get on and cut the grass. I managed half and was sobbing in pain. Honestly all the things that I would just do without thinking I'm finding so so hard. I'm normally so active and none stop with lots of energy. I can't stand to be like this. It's upsetting me so much. This morning I can barely move sad I feel exhausted !!

      I hope your ok and thankyou for your help when your obviously going through a lot yourself. Im so overwhelmed by the support I've had on this site. It's amazing!

      Best wishes

      Vicky xx🌷

    • debbie68552
      debbie68552 victoria_59764

      Posted

      Hi Vicky,  Have they ruled out endometriosis?  It can be very painful and cysts can form on the ovaries.  I had it too in my younger years, but there are things they can do for it.  It would be best to google it than me try to explain it.  

       I am looking at all the work I should be doing around here, and know what you mean about going to lie down, but seeing something that needs to get done.  Pushing a lawnmower is probably one of the worst things though!! We live on a farm, so I ride the tractor to mow grass. lol  Much nicer!!  Take Care,   Debbie

    • victoria_59764
      victoria_59764 debbie68552

      Posted

      Hello. Yes endo was ruled out a few yrs ago. It's also a tricky one because I have IBS and that can also cause abdominal discomfort.

      I know it probably wasn't the best idea to do the grass but I'm sick of not being able to do what I normally would sad

      I just can't believe how exhausted I am over the smallest things.

      Maybe I'll have to invest in a sit on lawn mower lol 😉Xx

  • kaz_40
    kaz_40 victoria_59764

    Posted

    Hi victoria59764 Bless you hun you are going through the mill.so sorry to hear all that youve been through. Your gp needs to refer you to see a rheumatologist, its they that normally diagnose fibromyalgia. Other conditions like rheumatoild arthritus has to be ruled out. The rheumatologist I saw got me have a bone scan more blood tests, he did a pressure point test on different parts of my body. Their are 18 in total I got the jack pot. Blood test showed I was low in vitamin d. he refered me back to my gp for pain meds. Im no dr but it sounds to me like it could possibly be fibro. for a definite diagnoses you need to see a rhematologist. I would see or speak to your gp and see if they would refer you.take care x
    • victoria_59764
      victoria_59764 kaz_40

      Posted

      Thank you so much for your reply. You've been so helpful. Do you think I can just request that I'm referred? I'm so worried they'll think I'm being completely over the top!!

      There is one other thing that occurred to me. Do you think the symptoms could be caused by a withdrawal from the painkillers? Last weds when the doc told me to stop taking two of the pain killers I got much worse. By the fri I was feeling horrendous. When I started taking them again ( once again docs advice), a few hrs later I felt much better!! I've been taking the pain killers for the slipped disc for some weeks now. It just crossed my mind.

      I'm very sorry that you suffer with fib. How do you manage it?

      Thanks again for all your help. I can't tell you how grateful I am.

      Best wishes

      Vicky

      Xxx

    • katishma
      katishma kaz_40

      Posted

      My gp referred me to a rheumatologist after the cardiologist suggested. He did the pressure point test. As many doctors as I had seen he was the first to do it. Thankfully my gp gave mIe the referral.

      Our local rheumatologist doesn't believe in fibro she said, so sent me to a specialist 3 hours away.

      The drive was well worth it. I had 12 of the pints that first visit.Ordered blood work. Vitalmin D was low. (I had just finished a 6 weeks round of it and was still low)

      Had appointmennt with him last week. Said had gotten much worse. I could have told him that. I hurt all over and ached. Put me on meds to take. Recommended physical activity or exercise 60 minutes 6 times a week. (man is crazy!)Put me on pain med also.

      I've felt better these last 3 days than I have in months.

    • kaz_40
      kaz_40 katishma

      Posted

      Hi katishma  pleased to hear you are on meds that are helping you, its always an added bonus when we find something that works for us and lessens the pain. As for exercise thats a laugh stupid man he wants to try living with fibro exerciseing. as for the rheumatologist not believing in fibromad shes in the wrong job.Its good your feeling better to how you have been feeling, I hope this continues for you. take care
    • victoria_59764
      victoria_59764 katishma

      Posted

      Hello so pleased your beginning to feel better!

      How do you cope with that exercise regime? Sounds like an awful lot. Gosh the mere thought of doing that with the way I'm feeling right now, makes me quiver! You poor thing.

      I'm confused as I thought it was a rheumatologist that diagnosed fib? Isn't it a shame that mani health care professionals don't believe in this dibilitating condition.

      My mum suffers with MS and again there's no cure. Whey my mum visits the GP with one thing or another they're hardly interested and basically tell her to put up and shut up!

      It seems the case with many incurable conditions. Hope you continue to feel well!

      Best wishes

      Vicky xxx

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