Looking to connect with adults with SC. Horrible body aches making it hard to cope with parenting and daily life.

[QueenZelda]

Hi I'm new here and I am 39 living with sickle cell. I am also a mom of 5 children and I was wondering are there other parents who have multiple children and how do they cope every day. Now that I'm older I experience full on body aches every day. Does any one else deal with the constant body pain all over? It makes it hard to be the mom I want to be and it's starting to get me down.

[johnnie5]

Hello queen zelda. I am 39 as well and I have one boy but two other kids through marriage so I think I know what you mean. I guess it can get you down. As we get older as you know we are going to experience more aches and pains that comes with age, not necessarily with the sickle cell. I wanted to let you know that I am out there too. If you respond I may be able to answer your question more in depth.

[QueenZelda in reply to johnnie5]

Johnnie5,

Thanks for responding. When I ask my hematologist about the aches she simply says that I'm 39 years in my disease and this is normal but then doesn't have an answer as to how to cope. She just wants to give me more pain meds which I don't want. I'm trying to find middle ground as to where I could function better on a daily basis. Any suggestions?

[Luvnuallways in reply to QueenZelda]

You May add supplements such as green herb and Noni juice. Get massages and acupuncture as adjuncts to your pain meds. Unfortunately our treatment choices night now are pain meds hydroxyurea fluids or bone marrow transplants

The blood is doing as it is programmed to do and the body is aging so we can’t bounce back like we used to

Slowly increased graded exercise with gentle stretching

Can help but if you need to take the pain meds take them. Opium comes from a plant put here by the Most High. Don’t buy the hype about the stigma. If a diabetic needs more insulin as they age no one bats an eye. It is no different. The opioids dilate your blood vessels and make it easier for the abnormal blood to pass through. So it is not just ‘numbimg’ The pain it is doing a therapeutic job.

Look for the small victories and the beauty in each day. You have to budget your energy like you budget your money. With this disease our energy is more limited. But we find ways to manage.

Like you I am a mother of a large brood (7). And in the long run they will be there for.

[QueenZelda in reply to Luvnuallways]

Thanks for your reply. I apologize for the late response. Yes my kids help a lot. I have a 17 yr old 15, 11, 4 yr and 2...all girls except for the boy who's the youngest. So they are great helpers. The oldest wants to be a chef so she cooks a lot and that's a great help. I just don't want to put too much on them because they are still young and I know what too much responsibility can do to young kids. I experienced it growing up.

What exercises do you do? Everytime I try to exercise I end up in pain because I did too much. But I really need to up my stamina. Any specific suggestions?

[Hazeleyes05 in reply to QueenZelda]

Hi QueenZelda,

You are doing a great job raising 5 children. Like earlier said don't feel guilty taking meds, take it as you need it. I'm 47 with an 18 years old I thank the almighty my pains reduced as I get older. Take your supplements as often as possible go to the gym (do very light exercise) or take long easy walks. Remember the exercises are for a proper blood circulation so no heavy exercise please. Also practice the breathing exercise which I want to believe you already do if not speak to your haematologist. Let your children help as much as they want to & educate them about your health. Talk them through your pains so they understand when you are too tired to get up. Stay positive and drink as much water every day as possible. May good health & pain free days stay with you.

[jo19]

Hi QueenZelda, hope you're well. I actually remember when I joined this forum, I had a post "sickle with children". I wanted to talk to other mums who had sickle cell and how they coped with having children. I am 39 years old as well with 3 children. I actually wanted two but got pregnant on the implant. I didn't want more because of my health. I am going through everything you are talking about right now. As we grow older, we battle with chronic pain and its very hard. I know how I battle with 3 children so with 5 kids, you are doing the unimaginable. You may not want pain killers, but honestly I was like that until the pain got in the way of taking care of my children. We are living longer now than years before due to how we are managed but our bodies are ravaged by so many attacks. Dealing with chronic pain is hard and finding what medication works for you is harder but try and be open to it. Yes you will become dependent, but you won't suffer in pain and you will be able to do more with your children. Wishing you all the best.

[QueenZelda in reply to jo19]

Thanks for replying jo19, I noticed that medical marijuana is getting a lot of attention recently for chronic pain. Have you or anyone try this for their pain? SCD is on the list as one of the approve conditions for medical cannabis. What's your thoughts on this?

[jo19 in reply to QueenZelda]

To answer your question honestly, I have always been so scared of trying marijuana and medical cannabis. I have this image in my head of eventually looking and smelling like a drug addict. I know however that is not true. My husband did suggest medical cannabis and CBD oil. I don't know if it's the same. Right now I am on 100mcg of fentanyl patches which I will say it's a great help for waking up without severe aches and pain in the morning. I'm also on oxycodone and pregabalin. I use the oxycodone for when pain increases. I'm not allowed to use any anti inflammatory medication because of my kidney disease unfortunately as they can be very helpful. So right now, that is how I am managing my chronic pain. How do you manage your chronic pain?

[QueenZelda in reply to jo19]

Hello jo19, I apologize for the late reply. I take hot baths and I do a lot of deep breathing exercises for my pain. I try not to take too many narcotics. I actually want to try other natural solutions. Also I recently became a big fan of mind over matter. A lot of people won't agree with me but I have reversed my crisis many times by thinking of being pain free. Let me be clear its not easy but our mind is a very powerful thing and it's takes a lot of energy to do that and will power. I try it at times and it works especially for the milder pain when I need to be somewhere .I also believe that we make the pain worse if we dwell on it and focus attention to that spot. I know it's controversial and most won't understand but as I get older I realize more of what out brains are capable of. What your opinion on that?

[victoroluwole]

Hi

I am 52 years young and have lived with SC all the way.

I got to find out about a herb grown in Nigeria. I have used this herb since the year 2006 and I have never looked back.

I have reduced pains and symptoms and the best bit is my hospital admissions which were usually 4 or 5 times a year have gone down to one admission a year or one admission in two years.

Mrs Hilda Ogbe (deceased) was in charge of production and her family has continued the good work, as the herb is now produced into capsule form.

Moreover the University of Benin, carried out research on the herb with wonderful results to support the efficacy of the herb.

If more information is required, please feel free to contact me.

Victor

[Hazeleyes05 in reply to victoroluwole]

Hi Victoroluwole,

I would like to know more about the herb please and how I can get some.

Many thanks

[victoroluwole in reply to Hazeleyes05]

Hello Hazeleyes05

This herb is sold in Benin City, Nigeria.

If you have family or friends in Nigeria, they might take a journey to Benin to purchase the herb for you.

If not, the alternative is sending money through Western Union and when received the herb is sent to you by special post. It normally takes a week for you to receive your order.

[Hazeleyes05 in reply to victoroluwole]

How would they know what herbs to get? A specific & detailed information will be appreciated.

[victoroluwole in reply to Hazeleyes05]

There is a booklet made by Hilda Ogbe, “Sickle-Cell How To Cope “.

99% of further details that you require are in this booklet. If you’re really interested, you need to order this small book for yourself. Manager for Hilda Ogbe Foundation is Agnes on : 00234 8133813535.

[Divadee]

Hi QueenZelda

I am 46years old and with two children.

I would recommend observing your day to day activities, I believe theres something that triggers the pain.

Once you can identify what triggers it you have to either slow down or take the activity out .

Some yoga would also help.

Once I identified most of mine it helped me.

Do a lot of body listening once you get an incline of any pain before it intensifies.slow down.

[Finalybeingheard]

I am on hydroxyurea 1000mg. and pure CBD works no THC just natural. Get 25% CBD & 1% THC, it will not alter your mind or give you a buzz, it will just relieve your pain. And help you get on with your day. And you should talk to your doctor about all that pain you are experiencing, you may be having Sickle Cell crises. Hydroxyurea helps to reduce the amount of crises you get. I used to in the hodpital at least 7 times a month, now im in there once a week, my spleen has been giving me issues, my lungs are damaged. I have a chest infection again, I went Septic in January, I was in the hospital last week with pneumonia, so now im going back to my Naturopath! They are effective. The Doctors say there is nothing more they can do for me. My Naturopath cant cure me but at least they make me comfortable and able to continue God's Work! He is my Refuge and my Rock in these perilous but Prophetic Times. We need to be our own Advocates and make sure we are getting the proper treatment and medical attention we so deserve and need. Please keep me posted on your results or what the Doctors say! If you like, you can email me and you can also check out my show on my youtube channel Regena finding self! Look me up on Facebook Regena Provost.